Larry A’s Story

Male 2August 28,2009 , I was a 51 year old self employed c-store owner/operator of 33 years, husband of 33 years, father of two sons. Life was not perfect but it was good. I had diabetes type 2 that I took oral medication for but that was all. I had developed neuropathy in my feet but did not take medication for this. I had experienced some mild depression due to the death of my mother and a close friend and had been given samples of Lexapro by my doctor, which I took for about 4 weeks but quit 2 weeks earlier due to having bad dreams. I had never taken anything for depression or anxiety prior to this. I had a history of a silent heart attack and had a heart catherization which had revealed a blockage of 100 % that had been naturally bypassed with collateral blood flow development, with minimal damage to my heart muscle. I was able to do most anything I wanted to. This is my story which is being told by me with my wife’s assistance as a nurse and someone who has been beside me throughout this entire life changing experience.
August 29, 2009, I visited the ER for a blister to my right big toe that had developed after weed eating a few days earlier. There was some mild redness around it and with me being a diabetic I felt I should get it checked. I was prescribed a 7 day course of Levaquin. I didn’t have a clue this would change my life forever. 9/1/09 Tuesday, I went to my primary care’s office to have my toe rechecked and was referred to a surgeon. I talked with my doctor about mild depression symptoms, now with anxiety and feels like my insides are shaking, sharp pains in my head. I do not remember if the jerking was mentioned at this point because I thought it was nerves due to my emotions. Informed MD that Lexapro 10 mgs samples that he had given me a few weeks prior had caused some bad dreams and had been discontinued a couple of weeks earlier. Requested to try something else. Cymbalta samples of 30 mgs to be taken once a day were given to try.
9/2/09 Wednesday, went to ER per instructions for surgery consult. Scheduled surgery for debridement of toe ulcer, set up for Friday 9/4/09. Anxiety noted, feeling shaky, feel so cold like I can‘t get warm.
9/4/09 Friday morning went for minor surgery debridement, no anesthesia required, due to diabetic neuropathy. Post op instructions given. When trying to go to sleep, that night, jerking in both legs noticed resembling a nocturnal myoclonus that would not stop. I developed anxiety with stuttering, words being repeated and was having some difficulty swallowing and talking, especially during these jerking periods. This had never happened to me. I thought this may be just an extreme case of nerves. My wife tries to rub my back to help me relax, just touching my skin causes me jerk immediately. Noticed muscle fasciculations in various places, for example arms and thighs. These could actually be seen moving under the skin like ripples.
9/5/09 Saturday, feeling anxious, shaky, continuing with myoclonic movements, mostly while lying down and occurring more frequently on the right side. It feels like my insides are shaking. At bedtime myoclonic movements more rapid, about 20 to 30 or more per minute with dry mouth, difficulty swallowing and talking, night sweats. My wife who is an RN wanted me to go the hospital. I said it probably would not happen when I got there and I would look crazy if I tell them what is happening. I got up to get in the recliner in hopes that it would stop. It seemed to be occurring when I tried to relax my brain. I got in the recliner and turned on the TV hoping to refocus. I did not know what was happening to me. This was freaking me out. I continued to jerk in the recliner, not as bad as while I was lying down. I felt like my body was under attack, or wondered if I was having a nervous breakdown.
9/6/09 Sunday my symptoms continue, also, having sharp pains deep in my head like lightening bolts and now terrible diarrhea , to the point where I could not make it to the bathroom. I decide to call the doctor in the morning if no change.
9/7/09 Monday, my wife called my doctor’s office and spoke to his nurse, told her about symptoms and told her I wasn’t going to take any more of the Cymbalta. I had taken 5 doses and my wife thought that since this was a psych drug it may be causing extra pyramidal symptoms. At this time I didn’t make a connection to the Levaquin, not thinking an antibiotic could possibly cause any of these symptoms.
9/9/09 Called doctors office to schedule an appointment, because symptoms were continuing and worsening.
9/11/09 Friday went to doctor’s office, explained what had been happening, and all the symptoms. He did a neurological check, my hands had a tremor. He was concerned about my symptoms and thought I needed to be referred to a neurologist, ASAP for “new onset significant myotonic jerks”. He gave me three samples of Amrix 15mgs (a time released muscle relaxer) to see if this would help me through the weekend, and if they seemed to help, let him know. He would call a prescription in Monday. I was hoping I would jerk while in his office so he could witness what was happening, but did not. I then went to a follow up visit with the surgeon for my toe. While I was waiting in his office I had several jerks. I did not mention these jerks to him when he came in. He checked my toe and gave me continuing care instructions and stated my toe was healing fine.
9/14/09 The Amrix may have helped slightly, but symptoms remained. My wife called to let my doctor know and he called in a prescription for Amrix 15mgs, quantity 14 with no refill in to the pharmacy. His nurse said they were trying to get an appointment with a neurologist and would let us know as soon as possible.
9/16/09 Symptoms were continuing, my wife an RN was at work at the hospital (night shift) and I had forgotten my medicine, the Amrix, in her purse. I called her to let her know I was coming after the medicine. When I got there I was very shaky and having some mild jerks. My wife asked a couple of nurses that she works with if they would observe the movements because basically my wife was the only one who had observed them. They agreed and saw some movements and called to the ER to see if the doctor would mind informally observing what was happening. He agreed and came to watch. He did a brief neuro check and listened briefly. I told him I was supposed to be going to a neurologist soon. He thought I should try a simple nerve pill to see if this would help while I waited for my appointment. He prescribed Ativan 1 mg to be taken one tablet at bedtime.
9/17/09 Picked up prescription at the pharmacy for Ativan 1 mg.
I took one which did seem to help with some anxiety and calmed the jerking a little.
9/24/09 I saw neurologist in Hattiesburg, MS today for my consult. He did a neuro check, listened to my symptoms, told me he couldn’t explain what was happening but that he needed to run some tests. He called it a mystery. He told me not to take the Amrix anymore, ordered a MRI of brain and c-spine c & s contrast, an EEG, labs B12,CMP, ammonia level. Ceruloplasmin, TSH, SPEP Metals.
9/25/09 I returned to his office for the EEG the following morning.
The technician proceeded to paste the electrodes to my head and body and described the test to me. My wife was present in the room. Soon after beginning the test I was having muscle twitches, then almost continual mild leg jerks, more on the right. The tech noticed this continuing to occur and went to get the doctor. He observed these movements and summoned another neurologist to come and see. My neurologist noticed my right thumb moving and called it chorea. He stated that I didn’t need to drive anymore.
9/28/09 ???My wife called back for my results and was told the results were normal for the EEG.
9/29/09 I went to have my MRI’s and was given Niravam sedation 2.5mgs.
I had no jerking episodes for the following couple of days.
10/1/09 My wife spoke with my PCP at the hospital and told him about the Niravam (a form of Xanax) stopping the jerking and he said he would call in some to try and see if it would help. I picked up the prescription for Xanax 1 mg at bedtime. This did seem to help with the jerking and anxiety. I was able to rest better. Spoke with neurologist’s nurse and he wanted a spinal tap and EMG done.
10/21/09 My symptoms are continuing with the Xanax no longer controlling my jerking. My wife did some research and called the neurologist to ask if Klonopin might help and could I try it. He agreed and called in a prescription for 0.5mgs Klonopin TID. I picked up the prescription and began taking it.
10/23/09 Spinal Tap done at Forrest General Hospital. It was a very painful experience. I had to lie on my stomach and hold on to the upper edge of the table. I felt extreme pain that went from my hip to my toes and I screamed. The doctor told me he hit a nerve. He was unable to get enough fluid and had to tap me again . He hit a nerve again. When the nurse took me to recovery I began jerking, shaking, and crying. The nurse called the neurologist and asked if she could give me a Klonopin, which he ordered.
10/29/09 Went to neurologist’s office for EMG. The test was explained to me and the tech proceeded. My wife was present. I reacted to the stimulus with strong legs jerks almost continual. My heels were rubbing so hard on the sheet I thought my skin would be gone. When the first part of the test was complete, I was exhausted, anxious, having difficulty swallowing. The tech left the room and my doctor returned and said “I’m not going to finish the test, I‘m not going to put you through anymore.” We went to his office and he told us the spinal tap CSF fluid had an abnormally high result of protein, level of 237 in which normal is 15-40. I reported the Klonopin helping but symptoms not gone, low back pain. He states it is still a mystery and orders a MRI c&s of T-spine and L-spine. He said this could be serious, possibly fatal, or cancer.
11/05/09 I had MRI’s done with sedation again without any problem. Klonopin is continuing to help. Jerks are under better control, sleeping a little better, but other symptoms continue.
11/8/09 Sunday morning, my neurologist called and told my wife, he may have found the problem. There were two herniated discs in my T-spine that was causing considerable spinal cord compression. He wanted us to see a neurosurgeon asap.
11/11/09 My wife requested a FMLA from her job as a nurse due to the seriousness of my illness. It was granted.
11/12/09 Visited neurosurgeon in Hattiesburg Ms he listened, and reviewed my records. He felt like my problem was originating in the brain and I needed to be seen by another neurologist at a teaching school. He agreed that there was spinal cord compression but that this was not what was happening to me. I may have to deal with the compression at a future date, but now we needed to deal with this.
Dr. Lynn’s nurse called to say I was being referred to UAB for a consult. Symptoms continue
11/24/09 Went to UAB for visit with neurologist at their movement disorder clinic. She did a neuro check and history, listened to my symptoms, and asked a few questions. She did not seem to take me serious. She was not overly concerned about the high protein reading and prescribed me some Zoloft for depression. She reduced the Klonopin, stating this may be causing my headaches. She recommended I take Ibuprofen for my headaches. She recommended I repeat the MRI and the spinal tap in 6 months. She tested me for neuropathy , I couldn’t feel the stimulus from my ankles to up my legs to above my knees. Before, I only had neuropathy in my feet. She did a couple of lab tests for Lyme disease and syphilis which were negative.
12/??/09 Returned to my neurologist’s office after UAB. He thought we should proceed with another consult and asked if we had any ideas. My wife said a doctor she worked with told her about a place in Houston TX, Methodist Neurological institute, I was referred there. My symptoms are continuing.
12/21/09 Visited neurologist in TX who did a neuro check, listened to my story and had me lie down on the table and I did start to have some jerking movements, with anxiety and difficulty swallowing and speaking. He stated he thought I was just having anxiety, causing my symptoms to be worse. He felt like the spinal cord compression was very significant and if it worsened I could become paralyzed. He recommended Psych treatment for the anxiety and thought I needed something else for depression. My wife and my sister Susan Titman, both RN’s asked questions and commented that I did not have a history of any psych problems or a family history of mental problems. They said this doesn’t fit the picture. He was not overly concerned about my high protein level but did recommend a repeat spinal tap to check my protein level three months from the original one and a repeat MRI of the brain in 6 months. My symptoms are continuing.
1/13/10 Returned to my neurologist for follow up after TX visit. He reordered the spinal tap. He stated he didn’t think I needed a psych consult.
1/20/10 I returned for a spinal tap, this one was less painful than the first. My neurologist’s nurse called before we got home to let us know that the protein was still very high and he was referring us back to the neurosurgeon, on Feb. 11, 2010.
January 22,2010 My sister in law visited us and asked if I had maybe taken a new medicine. Then the puzzle pieces started to fit together. I called the drug store and got a printout of my medicines and looked back over my copies of my medical records. I couldn’t believe it was finally making sense. 24 hours prior to my symptoms, I had begun taking Levaquin.
January 23,2010, My wife and I started doing research on Levaquin. We were shocked at what we were reading. Symptom after symptom, story after story, hundreds of testimonials, we had no idea an antibiotic could have done these things. It was like reading about what had been happening to me. My wife said as a nurse she administered it almost daily. How could the medical community not know about the startling number of extreme, bizarre, unbelievable, crippling, irreversible damaging adverse side effects. According to the research, the maker Johnson and Johnson, Ortho Mcneil and the FDA are fully aware of these side effects, but have not made the doctors aware of the seriousness of the devastating consequences to their patients lives. They had issued a black box warning in 2008 which I was not told about. This is unforgivable and unforgettable.
January 27, 2010 My wife called my neurologist’s office and talked to his nurse. She asked her to tell the doctor that we may have found the answer for the MYSTERY and would she ask him if he thought Levaquin that was begun the day before all this occurred could be the cause. She called back to say that he said it could have caused the jerking, but not the high protein, because they were due to the herniated discs. My wife and I fully believe that the herniated discs came from the extreme hard body jerks I was having. There is no other explanation for the herniated discs, no history of trauma, the area is very unusual for herniated discs, according to 2 doctors. When these jerks were so hard, in the beginning, before any medication, I remember my wife beside me in bed crying and saying if this gets any worse I’m afraid you are going to break your back and she tried to get me to go to the hospital. She videoed my jerking when I was in the recliner, the chair almost turned over. It was like a seizure but I was aware, I couldn’t speak or control my body movements. My wife decided to start writing a diary for me, of what was happening. The next few entries are from the diary she recorded for me.
1/27/10 I woke up about 07:00 am with a bad headache, took 2 Tylenol which helped after about 30 minutes. I was pretty shaky, but I tried to do a little paperwork. My hands shake so bad I don’t get much accomplished. I had a fuel pump that was not working at my store so I went to the store to work on it and spent about one and a half hours working on it. That was the most I had worked in months, since this began. My sons have been running the store for me. I was very tired but, my wife and I got an invite to go to supper with my sister and her husband. I decided to try and go even though my diarrhea was bad. I made it fairly well but my hand tremors were really bad and had diarrhea right after supper. When I got home I took my Klonopin 0.5mgs and went to bed. The jerking to my legs, hips, and body began almost immediately. I started to have pains like bees stinging me, mostly on my head and legs My wife tried to rub my back and see if this would help, but just her touch would stimulate a bad jerk. This continued for at least an hour, and finally lessened enough for me to go to sleep. Woke up wet from night sweats again.
1/28/10 I woke up at 05:00 am and got up. My wife said I had been jerking, my legs, my hips, whole body, intensely for most of the night. This was more than typically. My lower back was hurting bad. I decided to sit in the recliner and turn on the TV and see if it would stop. I took 600 mgs of Ibuprofen for my back. The jerking stopped as long as I was sitting up in the recliner, so I stayed up till 06:45 and went back to lay down. As soon as I laid down it started back, hard jerks again. I became very anxious, felt like it was hard to swallow, fearful, tears in my eyes, like an anxiety attack. It had been a while since it had been this bad. My wife got up and thought I should go to the hospital, but I said I would try taking Klonopin 0.5mgs and see if it would stop. I turned on my Ipod to see if the music might help. The jerking lasted approximately 30 minutes and finally subsided to a minimum and I drifted off to sleep. My wife had gotten up but said she came back in to check on me and I was jerking in my sleep again. I slept till noon got up felt tired, but my back pain was less. I woke up wet from night sweats again I drank some coffee to wake up. About 1:30 pm I tried to do some paperwork on the computer. My hands are so shaky I can’t continue. I feel so nervous inside, hard to swallow. About 3:00 pm I take an Ativan 1 mg to see if this will help. I feel my stomach cramping again, another episode of diarrhea. I’m weak and tired, I have to go lie down again. I woke up about 8:00 pm, very tired ate a little supper.
1/30/10 About 10:00 pm, I sat down and watched a little TV , took a 0.5mgs
Klonopin around 11:00. I laid down about 11:30, About 10 minutes after I laid down I began to have hard jerks, approximately 30 to 40 jerks, some in sets of 5or 6 with a minute or so in between, hard to breathe and swallow, then I would think they were gone but they would come right back. They then started to be milder and I was able to fall asleep.
1/31/10 I woke at 8:15am when my wife came in from work to go to bed. I had a bad headache, was damp from night sweats, got up, took Ibuprofen 600mgs, Zoloft 100mgs, and Klonopin 0.5mgs, and laid back down, jerked only a little and fell back asleep. I woke up at noon, felt a little better but was having tremors inside and out. I tried to do a little paperwork but my hands or my mind won’t quit shaking. I haven’t eaten all day in hopes of not having diarrhea, and I’m not hungry. I fixed some leftovers for my wife It is 5:00 pm, I feel exhausted. I am taking Ibuprofen and going back to bed. I got up at 8:30 pm and ate supper, watched a little TV. I went to the store and checked on everything, then came back home, visited with my son a while. I took my Klonopin 0.5mgs and went to bed. I had mild jerks, not as bad as the night before. Had night sweats.
2/1/10 I woke at 7:00 am had headache 5/10 scale, took Ibuprofen 600 mgs, had breakfast and coffee, felt bad, took morning meds, Zoloft 100 mgs, Glynase and Actos . I laid back down at 08:30, and started to jerk, Got up and went ahead and took a 0.5mgs Klonopin, after a few minutes of jerking was able to go back to sleep. Woke up at noon with clothes wet from night sweats, and tremors inside and out. Checked blood sugar, it was 67, I ate some candy and had a bowl of cereal. After a little while, I tried to do some paperwork, accomplished a little, but had to lay back down at 3:00 pm had mild jerks. I slept till about 6:30 pm. I felt better, went over to the store and talked to a few customers, began having anxiety, went back home, tremors inside and out. Ate supper, checked sugar 195. I don’t feel good, have a headache starting again 5/10 scale. I took a B-12 1000mcgs and B-6 100mgs and 2 Bacid caps, for my diarrhea, per my wife’s suggestion.
2/2/10 I went to bed, had night sweats, had several mild jerks, had a sharp pain behind my left knee. My left hip, in the buttock, muscle hurting, even tender to touch. Having lower back pain, 6/10 scale.
2/3/10 I woke up with headache and watery diarrhea again. Checked my blood sugar ,79. I’m not going to take my Glynase or Actos drank coffee. I worked on some tickets about an hour, but got so shaky, like my sugar was low, had some candy and peanut butter crackers and milk. Checked sugar was 100, must have been pretty low. I have to go lay down. I feel exhausted.
2/4/10 Diarrhea several times today. I feel bad, I can’t describe it.
2/5/10 I woke up with diarrhea, headache and my right shoulder hurting, laid back down until 9:30 am. I took my blood sugar, 107. I worked about an hour, off and on paperwork, went to the store to check on things and get the mail and returned home. I made out the bank deposit but am unable to go the bank. I woke my wife, she had worked the night shift at the hospital. I told her I couldn’t go to the bank. Diarrhea again, watery green. I laid down till 6:00 pm. My wife and I went to a friends for supper. Got home at 10:00 pm, diarrhea again. I had the worst night I’ve had in a while. I laid down about 11:00 pm shortly after taking my Klonopin 0.5mgs. I started jerking almost immediately, more upper body and head jerks than ever before. I was having some hip movements, also. I had to get up with stomach cramps 2 times, loose stools again. I decided to get up because of the stomach cramps and jerking, hoping it would stop so I could sleep. I stayed up till almost 2 am. I started jerking again, tried turning music on but this didn’t help. It seemed like I would never stop jerking. My wife said it lasted at least an hour, as she sat up beside me. I awoke at 6:30 am and took off my wet t-shirt, from a night sweat. Laid back down, mild jerking dozed off to sleep, and woke up at noon, wet from sweats, see next day.
2/6/10 I woke at noon, wet from a night sweat, headache, felt so stiff when I walked. I checked my blood sugar, it was 101. I am having tremors, my right leg is hurting to walk, also my left hip hurts when I walk. I have already had a stomachache and loose stools. I am trying not to take anything for my headache, I’m scared to take something because of the possibility of some other reaction. I did take 2 Bacid caplets, vit B-12 1000 mcgs, Vit B6 100 mgs, per my wife’s recommendation and Zoloft 100mgs, Klonopin 0.25 mgs. I didn’t take any oral diabetic meds, because my sugar has been going to low. I am going to try to do some paperwork if my hands will stop shaking enough. I’ve tried to do some paperwork, but I feel to nervous. I stopped to fix something to eat. Stomach ache, diarrhea again. I ‘m trying some more paperwork. I finished two statements but it takes me so long. I am so shaky and nervous. I took an Ativan 0.5mgs It is 4:30 and I can’t take it any longer. I have to go lay down. I had only mild jerks and slept till 6:30 pm. I feel better but have to go to the bathroom again. I don’ feel like starting on anything else. I walked to the store to get some groceries for wife. We fixed some supper and ate. When I got up from the table, my left hip was hurting, stiff when I walked. I am taking my Klonopin 0.5mgs now, in hopes that I won’t jerk like I did last night. Back to the bathroom again, loose stools, It is 10:30 pm.
2/11/10 I returned to neurosurgeon who continues to say that the spinal cord compression is not the cause of what has been happening to me. He said I may have to deal with the disc problem in the future but as long as I am asymptomatic he would not recommend surgery. He said he didn’t know what effects the high protein in my spinal fluid would have over time. On the way home, I felt like I was being attacked by bees, I was hit with stinging pains ,I counted 28, all over my body, my fingers, hands, arms, my head, legs ,feet
2/26/10 I returned to see my neurologist to see if he would refer me to a doctor to see if Levaquin or a medication could have caused these bizarre symptoms that I have been experiencing. He then ordered a TB test (PPD) and a HGBAIC, increased my dose of Klonopin to 0.25 in am 0.25 noon and 0.50 at HS, and rescheduled an MRI for May.
I was referred to a clinical professor of pharmacology, at University of Indiana.
April 2010, my wife and my sister both RN’s, drove me to Indiana. I never got to explain why we drove all the way from Columbia, Ms. We had read that he had studied about the effects of Levaquin .When we mentioned the herniated disc in my back, he said Levaquin shouldn’t have caused that. We tried to explain that we felt it was the myoclonic jerks that caused the herniated disc and that we wanted to know if the side effects of Levaquin could be causing all my bizarre symptoms and was there anything to treat these with. He didn’t want to listen, appeared to be in a big hurry. He wrote a prescription for a TEE (Transesophageal echocardiagram) and blood cultures and stated that I may be throwing some tiny clots that may be causing the stinging pains I was having all over my body. So, we returned home had a TEE and blood cultures done, which were fine and I pretty much gave up on ever figuring out what had happened to me.
I tried to carry on but was not able to, my business and finances had suffered. I eventually had to sell my business in 2011. I considered filing for disability but I continued to hope I was going to get better. I finally resorted to filing for my disability in March of 2013. I got a call notifying me I had been approved June 24,2013. At that time I was in Forrest General Hospital. On June 6, 2013, I had become unable to walk and my wife took me to the hospital, where they did a spinal tap, revealing a CSF protein level of >700. I was admitted with GBS (Guillian Barre Syndrome) /AIDP ( Acute inflammatory demyelinating polyneuropathy) which occurs in approximately 1 in 100,000 people.. I received 5 doses of IVIG and spent 18 days in the hospital rehab learning to walk again. I feel this is still related to the nerve damage that I incurred due to Levaquin,(flouroqiunolones). There is now a study linking a higher incidence of GBS and flouroquinolone use. I continue to suffer daily from chronic neuropathic pain, chronic fatigue, tinnitus, noise sensitivity, memory loss, depression, mild myoclonic jerks, tremors, occasional night sweats, diarrhea, mood swings. These symptoms seem to cycle. I have been told now, I have CIDP (Chronic inflammatory demyelinating polyneuropathy). As of late, Sept 4, 2015 my neurologist has decided to send me to LSU to a neuromuscular specialist for possible biopsies of nerve and muscle. He states he still doesn’t know what has happened to me and will not say the Levaquin caused it. Now six years later, there are good days when I can do normal things even do a little yard work but I suffer from extreme exhaustion afterwards ,requiring lots of sleep and bed rest up to 2 or 3 days at times. I must use a walker sometimes and my pain and memory is worsening.
Over the past year, there has been a tremendous outcry from the people whose lives have been forever changed by taking this class of drug. There have been numerous news stories by the media, on major networks. Antibiotics are not generally linked to such devastating side effects, therefore the general public doesn’t make the connection to the bizarre symptoms. I have all my medical records and lots of research.
Thanks , Larry and Cindy A

Symptoms After Taking Levaquin
This is a list of the symptoms that began after I started taking the Levaquin, pretty much in their order of beginning occurrence. Some have faded in intensity and improved, but tend to cycle in severity.
Anxiety, extreme nervousness, Anxiety and panic attacks
Sharp pains that feel like a lightening bolt deep in my head which have progressed to become severe headaches
Depression, hopelessness
Visible Tremors hands/Internal tremors (like my entire insides are shaking)
Muscle jerks or spasms (myoclonic type) to both legs worse on the right these would occur approximately 30 or more times a minute, also the right arm with a cogwheel type motion at times
Myoclonic muscle jerks or spasms involving entire body jerks (happened at least twice) in which entire body felt as if it came off bed three or four inches. I thought my back would break.
Myoclonic head and upper body twist type jerks not as often as legs, usually occur when sitting in a chair
Muscle fasciculations noted to forearms, thighs
Abnormal large jerks to abdomen (rapid movement sideways)
Hip thrusting like motion sometimes will occur from five minutes to an hour after lying down, also, with slow cogwheel like movements, body will tend to curl in and out of a fetal position without control
Low back pain, becoming worse especially after jerking
Right shoulder pain at the joint / stabbing pain back of left knee
Stinging pain like sudden bee stings all over my body ( nose, face, fingers, knees, head, even the eyeball)
Feel cold all the time, use a portable heater close by (can’t get warm)
Night sweats to the point of having to change clothes
Extreme exhaustion after jerking episodes, generally requiring a period of at least two or three hours of sleep to be able to overcome
Chronic fatigue, wake up tired
Low stress threshold, unable to handle stress at work, or after working on paperwork on the computer for about thirty minutes to an hour, have to lie down
Repeating words, stuttering, speech hesitation at times, inability to produce words for a short time, especially during jerking episodes
Skin sensitivity to touch all over, with rapid muscle spasms upon touch
Pinpoint areas of intense itching
Noise sensitivity, noises sound unusually loud and irritating, severe ringing in the ears
Brain foggy, My eyes feel like they have a film over them
Watery diarrhea with upset stomach, which comes and goes on a regular basis up to 6 or 8 a day, unable to hold at times
Dry mouth, difficulty swallowing
Left arm and hand goes to sleep at night
Hypoglycemia, I had to stop taking oral diabetic meds for a while. BS 30-60 at times.