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New to the community and found it by searching for others who suffer from similar feeling of electrical shocks in their head. I was diagnosed with seizures and Lyme Disease ( confirmed with 3of 3 bands IgM on Western Blot and elevated Lyme titer) on top of Fibro (elevated and increasing RF).... also have tinnitus. Have had 13 "seizures" in the past 6 weeks that only last a second but are strong enough to knock me off my feet if they happen when I'm standing and have nothing to grab on to. Not one while I was in the hospital for 4 days on video EEG, of course. They feel like someone is whacking my head across the room, but I'm not moving. Everything happens in my head. Had the full vision workup, and ENT says it's not vertigo or Meniere's. Neuro says there is no word in the medical vocabulary that adecuately describes this. Brain MRI showed a "spot" that was "consistent" with a history of migraines, so they are treating me with anticonvulsants to cover both seizures and migraines with auras and so far they are not working. Just wondering if any of you have ever been diagnosed with seizures because while doing some in depth research, I was shocked to learn that there are over 40 different kinds of seizures with very different kinds of symptoms! Have also read some very interesting comments from people that have had thyroid cancer on CancerCompass and the feeling of shocks in the head was one of their symptoms. I have an enlarged thyroid and nodules and am scheduled for a biopsy in 2 weeks so will cross that off my list. Have to rule out everything as Lyme, seizures and Fibro are a very complicated mix and like all of you, I'm finding that nobody really gets it. Hard to explain something that there is no word for.

21 Replies

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  • Welcome welcome B4Roses I am having trouble with my computer - this is my fourth letter to you the puter keeps missbehaving and removes the copy with a page change how annoying. I feel I now know you well so skip the blurb let me introduce you to two sites which are imperative to the site an of great help to ourselves.

    ww.fibroaction.org this is our mother site great for information on fibro progression the other is

    www.healthunlocked again our hosts but sources of info most uplifting.

    Please read our regulations on posting we are very strict on no swearing policy if you need to vent/rant and expletives are necessary please use *****

    Your mixture of nasties is pretty horrid but you will find everybody has fibro and the information they impart comes from their own shared experiences always check with your doctor about changing medicines adding in remedies etc we are not medics just fibromites.

    Enjoy the site do let me know if you have any queries.

    all the best

    xGins

    Volunteer administrater

  • Hi Gins,

    Thanks for the welcome and the guidelines. I'll have to remember the **** as they will come in handy.

    I will check out the links and do some reading and make an appointment to see my rheumatologist. I'd been in remission with my fibro for a while now and feeling quite good but I think either the Lyme or stress or a combo of the two maybe brought it back in a raging way because I feel it everywhere .

    What a kind and wonderful group of people. So glad I found you all!

    Barb

  • Hi,

    welcome. You have found a very friendly and helpful site so make yourself at home :-)

    Hugs

    Jillyxx

  • Yes I have! I can't believe how many replies on the first day.

    Thanks so much. I hope I can contribute!

    Barb

  • I have Fibro, and ruptured disk's in my back. I am so sorry for all the suffering you are going through. I pray they find out what's wrong so you can get relief from all you are going through. xxxx Mitzi

  • Hi Mitzi,

    Thank you for your kind words. This has been a rough time. You can understand as you must have some serious pain in your back too. At 52 I feel like I wake up and I'm the 100 year old woman every day. Never know what new is going to hurt me tomorrow....only people with fibro really understand that. I had been in remission for a while but that doesn't last forever.

    Thanks :-)

    Barb

  • Yes sweetheart I do understand. I'm also 52. I've had other things wrong with me throughout the years, always things hard to diagnose, lucky us. I had to end up going to a pain clinic as I wasn't able to lay my head down on a pillow for 6 months. So much tension in my neck,head and shoulders. Nothing helped to relax the muscles. I feel like they have a mind of there own outside of what my brain controls. I feel your pain honey. Hope you find out something soon. The pain clinic has made my life and pain bearable and I really don't know if I'd have lasted must longer without it. If I can answer any questions or be of any help please let me know. xxxx Mitzi

  • Me too! I had a wacky pain episode with my stomach and they thought I had porphyria...I mean who gets diagnosed with that? Then a spot on my lungs, oh no, JK, looks like maybe it's gone nos...then a total hysterectomy...I think in the end maybe it's all stress related and the body can only handle so much. Glad you found something that works for you :-))) Some days I feel like I got run over by a truck in my sleep and other days I'm so thankful when my dogs curl up next to my spine and keep me warm - I always wake up with less pain on those mornings. They're like little heating pads!! Maybe time to go back on pain meds though as these guys are getting old and unreliable!!

    B

  • B, I had stomach bowel issues too. So much so that I was sent to two different hospitals miles and states away. I also had a hysterectomy at 30 years old. Sounds like we are two of a kind. Please sweetheart check into seeing someone in a pain clinic. There a meds out there to help without making you feel out there. I take Opana ER and it has really saved me. I pray this helps as I know exactly what you are going through!!! Stay in touch. xxxx Mitzi

  • Mitzi, Ugh- you poor thing. Isn't it amazing what our bodies can put us through? I will see what happens this week after my thyroid biopsy and rheumatologist visit...Can only handle so much. My daugher has an antibiotic resistant infection in her sinuses that's moved to her lungs and she's been bounced and bounced from doc to doc for 7 weeks now. Going to NYC tomorrow to see if she's a candidate for a balloon sinusplasty because she had 3 sinus surgeries when she was a child and now she has a deviated septum at 22 and no one want to operate or touch her. They want to put in a central line but she refused so shes on Cipro + Doxy oral for another 4 weeks plus who knows what else (I've completely lost track) lung meds and nebulizer....when it rains it pours. Hope you had a nice weekend!!! XOXOXO Barb

  • Oh geez Barb, so sorry about you and your daughter. I pray she can get the help she needs. My daughter always brought me home her sinus infections when she was younger and it is a miserable feeling. I'm going back to the doctor Aug.5th as I had a colonoscopy last month and the light down my throat and they found two polyps and that I had a fungus in my esophagus and my stomach was irritated. Well, after two bottles of anti-fugal medicine I still don't feel any better. Always something. It's so frustrating. Let me know how everything goes sweetheart. xxx Mitzi

  • Yikes! You get over one thing and on comes another. I totally understand. We feel like we have the black cloud over our heads lately and hate to even call anyone....it's so hard to explain to people who have the blessing of good health. You do everything you're supposed to, keep a cheery attitude and pray that the cloud will lift and BAM, it either comes rushing back or something new hits.

    I will keep my fingers crossed and say my prayers for you too. And will keep you posted. This will be a long week for us.

    All day sorting out medical bills...what a mess. Have a good rest!! xoxox Barb

  • Thank you so much sweetheart. Hoping and praying you and your daughter get straightened out. I don't think with fibro we will ever be normal but it'd be nice to have more good days than bad. Hang in there, look forward to hearing from you and getting some good news for a change. :) xxx Mitzi

  • Hello 4BRoses, Welcome to the site. Its good to meet you. sorry I am tired and Foggy.so I`ll just say hugs sue xx

  • Sue,

    You are so sweet. I know the feeling completely. Thank you very much. I hope you had a lovely and restful day.

    Barb

  • Hi roses, I can so identify. On e of my first posts on the tinnitus forum was in regards to electric shocks. I could hear and feel them. Hear is a weird word for what it is when it happens inside your brain, but that is the only way to describe it. I get them often in response to a sudden noise or loud noise, but it doesn't jsut take that to make it occur.

    I also describe this as lightning shooting through my head. IDK hwat it is and haven't found an adequate explanation so far. I think it is associated with the T though. I have been dealing with the T better and having none or fewer of these occur.

    I believe that the tinnitus jumped onto the skirts of the fibro though. It is a recent thing and I have had fibro for years. I find that fibro seems to intensify any health issues I have.

    Lately I have had more jaw, occiput, and neck tension and this results in short bursts of noise, more a crackle but shocking, when I turn my head, eyes, etc., in the direction of the pain.

    I can't really give you much advice. I feel like both kinds of inner head noise have gotten better with my dealing with my tension rmore succesfully. In the case of T, I have learned to accept it, and with this comes fewer occurrences - or maybe I have just become less aware of it.

    I would love to know if you find out anything about the cause of this (post a new thread if you do please) though I doubt that anyone, docotr or not, can understand it without experiencing it. If more people had this issue, you can bet they'd have better ideas, lol.

    My best wishes that it gets better for you, Clare

  • Hi Clare,

    Thanks for your email and your description of symptoms. I seem to notice the tinnitus when it's more quiet, and toward the end of the day when I'm tired. Just a high pitched buzzing in the background. I was diagnosed with Fibro 7 years ago and had some trigger point injections and took some steroids and when my stress level went down, I was doing OK. Recently things have been VERY stressful and maybe that's triggered all of this. IDK. I guess I will add the rheumatologist to the list of docs to see soon too. I will definitely keep you posted and will start a new thread if and when I find anything out. With all the weird overlapping neuro symptoms, I don't want to get lumped into Lyme if it's not Lyme, that's for sure.

    You say you can't give much advice, but believe me, just knowing that other people are feeling the same physical symptoms that I am, that has no WORD to describe, is helpful in trying to find who to go to diagnose this. And associating the tinnitus with the neck pain and the brain zaps and fibro is huge. I am petrified to drive anywhere and I have 3 kids that are completely freaked out by all of this so the sooner that we get some answers, the better everyone will be. I am going to start by going back to the rheumatologist who I saw in NYC who was very good and see if I can get some answers :-)))

    Thank you for your kind words of encouragement and I wish you all the best too!!

    Barb

  • You're welcome. If you don't already feel like you belong to too many forums, you might want to check out this one: tinnitustalk.com/

    I hope it's not a problem to refer out from this one, but I thought it might be useful to you Barb.

  • Thanks Clare- I will check it out.

    Hope you're having a good day :-)

    Lousy weather here and my daughter is sick too so I'm running from doc to doc to doc....

    Appreciate the help!!

    B

  • Hi b4roses

    I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I am so sorry to read of the suffering that you have endured, and genuinely hope that you can find some resolution and relief to these issues.

    I suffer with migraines, and over the years I have had blackouts as a result. My neurologist said that they mimic epilepsy but would not diagnose me as having epilepsy because this happened so infrequently. I was given an artificial beta blocker called Verapamil, and for a short time (about a year) it worked well. Since my Fibro diagnosis I have become increasingly allergic to many things and this medication was one of them!

    My Migraines are not as bad as they use to be but they are getting there again! I find it very difficult sometimes to explain just how severe a Migraine can be and feel that you have to be a sufferer to truly understand how horrendous they are? A member from another forum sent me a private message to say the pain of hers was worse than child birth! And I honestly believe her!

    I want to wish you all the best of luck with finding the answers that you desperately desire and deserve to these issues.

    All my hopes and dreams for you

    Ken

  • Hi Ken,

    Thank you very much for the well wishes. I see why you can understand where I am coming from :-). I have had headaches for forever and always attributed them to my sinues, because that's what my mom said her problems were. It wasn't until my daughter started with classic migraines and occular migraines that I started to think maybe I actually was having migraines too. So I feel your pain. In any event, the neuro gave me a similar diagnosis- we'll treat for seizures, but we won't call it a seizure disorder until we rule everything else out first. And then of course it could be Lyme. I hadn't even gotten to the Fibro part....just that I have the high RF and had been treated for Fibro but thought I had it pretty well under control.

    I hope to read a lot of the posts and add my experiences. Thanks for the encouragement!

    Barb

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