Chronic Occipital Headache Symptomology

Hi. There. 45 yrs old female. Starting having back of the head occipital headaches for 6 months. Came in wave like spasms- jaw pain, ear pain, teeth pain. Drs said migraines but that didnt' seem to fit . Then I realized it was all coming from neck spasms. I would be left with a severe stiff neck. Then i started having head rushes while I slept of adrenaline from chest to head. Now I have extremely burning traps, shoulders and arms. I go to sleep and wake up burning and then they turn icy cold. Its excruciating. I did have a cervical MRI which shows a severe herniation at c6 c7 and a tinier one at C4 C5 and arthritis but to flare up so suddenly? Its daily. I feel like my shoulders are at my ears. Major health anxiety for 6 months including 3 MRIs, lumbar punctures, etc etc. (no EMG yet). Then, the TWITCHING began! It started in my biceps and went all over. Mine are more like pop/jumps. Some real twitches but those mainly while falling asleep. Also involuntary swallowing reflex kicks in as I try to go to sleep. Scary! Something makes me swallow. I also feel pain on the left side of my throat and left sided tongue pain- like Im getting a sore throat but fine when I swallow. I have convinced myself that the ALS came down and ruined my cranial nerves (jaw pain, ears, teeth) and is now in my neck and shoulders and bulbar. I do lift weights and was training for a competition when this all began. Now, I can do everything the same (no weakness) but it takes me DAYS to recover such that I am only working out three days a week now. Far cray from where I was only a few months ago. My muscles are sore when you press on them and on occasion get twisting forearm and back cramps which take my breath away. Saw two neuros. My first neuro who has been following me says, no way ALS. He said for a second opinion I could go to his colleague who is a neuromuscular specialist. He said fibromyalgia and possibly BFS. Said ALS does not present with the pain I have and no widespread fascics. Said probably not ALS but will do EMG (supposed to be today but snow storm ruined it for me UGHHHH!). Anywhere here are my concerns:- If ALS twiches are so fine and imperceptible, then wouldn't it make realistic for people with ALS to all of a sudden feel them widespread too? LIke one day they start to feel them all over as well because they didn't notice at first?-Does BFS present suddenly like this? I feel sore and fatigued all over. I can press my muscles and they hurt and its mainly in the area of the burning pain (upper body). That is where most of my fascics are which worry me.-Finally, I DO NOT and have never had an eye twitch which gets me worried that this is not just benign or anxiety produced. I can tell you I AM going through the most scary time of my life with these symptoms (been hospitalized twice, had many hyphochrondriac diseases throughout this process I was convinced I had). So anxious, hell yes. But why isn't my darn eye twitching! I do get twiches around my mouth and my chin did this weird shifting thing the other day, but no eye twitch, which I know comforts you that its all ALS.-All of this did start a week after starting klonopin, but I thought klonopin has the opposite effect, supposed to help twitches-Dr. Testing me for "antibody" for BFS- anyone else have this test? So now I have to wait another few days for this EMG (I cried when I got there and realized they were closed b/c they had no power b/c of the snow= cant do an EMG without power!) . I have been living on a thread. I have 3 kids who I can barely take care of b/c I am concerned this is ALS. I guess its because no other of the zillion tests I have taken have come up positive. I do have an ANA, Raynauds, Lyme , had open heart surgery for mitral valve prolapse and am hypermobile so I guess I would fit the BFS picture. Just wanted to get your thoughts. I feel like I have a new symptoms pointing towards ALS every week and can't do this anymore. Im barely surviving, can't work, eat, have fun, etc. Thanks!

Oh, still me. A few more symptoms. I am completely shaky in the morning. I don't know if its b/c of the meds (Dr. started me on lexapro and klonopin) but I wake up anxious and shaky, weak legged. ALso have internal tremors. Have no idea how to describe that in my head when laying down. LIke shaking inside. Also sometimes my burning pain goes over my ear and into my head. Then I also get head shivers. I know this sounds so much like anxiety. But something is WAY OFF in my system. I feel like every nerve is exposed.

Did you say you have Lyme? Probably every symptom you shared could be explained by Lyme. And a positive ANA? Have they explored autoimmune issues with you?Either way, it is not &LS and doesn't even come close to fitting into that picture....so you can close the book on that one.Hope you start feeling better soon!

Everytime I go to rheumy she says my ANA is low positive (I also have anticardiolipin antibodies as well) and that I have a constellation of little things but nothing that comprises a true syndrome like lupus, sclero, etc. I just wonder if maybe the flu I had flared up my lyme disease. Gross, but I also had a herpes blister on my mouth then so I know the herpes virus can cause nerve disturbances. Why don't the neck, back, pain, etc. and twitching, throat, add up to ALS to you? Just wondering what Im not seeing (I know Im not being rationale).

Eh no.... Not ALS. Every Symptom you describe is BGS normal :

Thank you all for your responses. WOW that list- I could have written it - even the involuntary swallowing reflex what is up with that? I wonder if it has anything to do with my one sided throat pain which I can't figure out. You have made me sufficiently more calm until I can get this EMG. I still don't think I will be happy until I get it. But it helps to get your opinion on it. Love the monkey and keyboard analogy! A few other question - does having "hotspots" matter- meaning I have about 6 locations that the twitches prefer.... and did yours just start one day suddenly and become a part of your life? Mine are like pops or jumps in my muscle, not necessarily twitches. And only last a second or two. NOthing long or repetitive except the butt rumble I had for like an hour last night!Anybody get tested for the "antibody." I am waiting for the kit now.

Yes throat pain and even a slight hoarseness plus globus are part of it.That List...... I spent 2 weeks in hospital, could barely walk due to my shakyness and pain. Could not blowfry my hair because of my burning shoulders and arms. I had multiple EMGs, transcranial magnetic stimulation, blood tests, MRIs, spinal taps, was tested for ANY disease possible, of yource including anti- Votage- Gated- Channel abtibodies, Lyme, MS, Wilson's, all kinds of myopathies. I was tested daily for all kinds of things, and was taken blood so mich, that I wondered if there's anything left.I was diagnosed with GAD and given Antidepressants, which made it all worse first. Then I found a specialist for fibromyalgia and CFS, who was able to help me. Today I don't have BFS an more, if I watch a lifestyle and especially my stress management. My BFS was post- viral by the way, 3 days of high fever and then strange neuro things started slowly, before suddenly BFS hell broke loose.