posted
Alrighty!! I seemed to have gone downhill with a bit of a relapse. My doc is figuring out a new treatment plan but in the meantime I am having a very scary time here. I have new brain symptoms that are scaring the living *&^^( out of me.
It started with losing vision in my left eye for a short time then getting a slamming migraine. Since then I have been having non stop headaches that won't go away with any pill. My hearing goes in and out. I have been getting brain Zaps that are so strange. I can't explain it. I will just be sitting there then I will feel really weird for a moment dizzy and out of it. Then boom this surge goes through my body and sometimes is painful sometimes not. My whole body jumps from it. I feels like it is coming from my brain into my neck sometimes. Also sometimes shoots into my arms.
I just have such a headache and my head feels a lot of pressure. I am also getting strange sensations all over my head, face & in my ears. What is going on. The neuro interference is scaring me. I keep thinking I am having a stroke or seizure or something. I am currently only on Zithromax and Mepron. Also Larazapam and my beta blocker. I am in my 16th month of treatment and never had this head pain and zaps like this. I don't want to drop dead home alone with my 2 year old. I have been on the Zithromax and Mepron for a long time so I don't think it is that. Any ideas or encouragement that I am not going to die. I keep thinking I have a blood clot in my brain or something that is not lyme related. Please help!! Michelle
Posts: 79 | From Oxford,MA,01540 | Registered: Jul 2004
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posted
You are describing my symptons to a "tee"!!!!!!!!! The brain zaps will diminish, mine lasted about a week and like you, I thought I was having a stroke, blood clott, whatever........hands were shaky, (still are at time), entire body would jerk/shake......I got to the point I wondered if these symptons were truly a part of the herxing process from the antiobodics........it makes you think something else is going on beside the herxing...........I did deep breathing exercises and tried to remain quite as possible, no noise........but this is almost impossible isn't it........
I almost went to the ER but thought what will I tell them, will they understand what herxing is anyway...........small town ER's doesn't have the best of doctors on staff (from my experience).....
Sounds like you are in a major herxing and the critters die-off is in heavy load releasing toxins.............have our tried lemon juice and water...........and also, Benadryl helps dialate the blood vessels and a mix of: Welches Grape Juice, 1 TBS. Olive Oil and 1 TBS. Lemon Juice will also help open up the blood vessels for detox. Sorry you're suffering, I know it is bad, just hang on it will let up...........
Posts: 97 | From Tennessee | Registered: Nov 2005
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posted
Well I had an MRI 2 years ago and all was good. I keep thinking maybe I am going to the ER then I am afraid they just won't do anything and I will waste my time. I have so much head pressure it feels like my brain is swelled. It has been going on for about a week now. I started going down hill about a month ago and the doctors thought I might be toxic so they stopped my meds for a few days then boom this started really bad.
I am back on my Mepron and Zithromax for about three days now and It doesn't seem to be helping. I feel like a bobble head. When I lay down it brings some relief but I have a 2 year old so I can't really lay down much. I just don't know who to ask to get the MRI. My LLMD is far away and the neuroligist that did the first one....well I haven't seen him since the first MRI. Should I try my quack PCP. He really doesn't know much about any of this either.
This is just scary and I want the inflamation in my head to go down if that is what it is. My hubby is sick of the ER and kind of rolls his eyes when I even suggest going for this. He just does not understand. I just don't want this to be serious and lose my life over it Today is not the best day for the ER. I know they don't do MRI's from the ER but can they do CAT scans or something and will that show anything. Thanks Michelle
Posts: 79 | From Oxford,MA,01540 | Registered: Jul 2004
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Have you tried Diamox? Helps with head pressure. Kind of like a pressure-relief valve for the head. Call your LLMD and ask for a trial of it. My doc says it helps about 50% of his Lyme patients. (Not me, unfortunately.)
Otherwise, for me, only serious migraine stuff helped -- Imitrex or Relpax. Which is definitely not everyday stuff and not for anyone with cardio involvement. It opens up blood vessels in your brain.
I feel for you as I kow how bad the head pain can be. You DO get to wondering whether it's Lyme or something else -- I used to think maybe I had a brain tumour. You DO start to doubt when it doesn't let up for weeks and weeks.. I imagine a SPECT scan would show a lot of hypoperfusion but that likely wouldn't change your treatment, really. However, it's liable to be more diagnostic than an MRI, since you've already had one of those.
Hope some relief is in sight for your poor head soon.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
I had the severe migraine stuff too. Went on for many months before they finally found something to control it. For me, it was Topomax that worked. It is an antiseizure med that is also used to control migraines. Sometimes with migraines you have to experiment to find the thing that helps.
FWIW, here are some of the things the neurologist told me could be contributing to MY migraines.
Hypothyroidism. We had to increase my medication, even though I was within normal ranges. Especially the T3 had to be increased.
Infections. Lyme, Babesia, Bartonella, Ehrlichia, all these guys and more can cause serious headaches, and need treatment.
Medication reactions. Sometimes the very drugs we take to treat the infections can cause the headaches. Important to check out.
Muscle Tension in Neck and Shoulders. I have a condition called Thoracic Outlet Syndrome which causes compression of the nerves and blood vesesl in the neck, shoulders, and arms. This can cause or aggravate headaches. She recommended muscle relaxers, acupuncture, and massage to help with pain and tension.
Other Hormonal Issues. Menopause, etc. Any hormonal swings can trigger migraines.
I hope they find something that helps for you soon. I know how scary and incredibly painful these headaches can be. If you haven't had a recent MRI, it might be good to have another to rule out anything gross. Things do change, and Lyme patients are susceptible to everything everyone else gets. Better to be safe, than to miss something.
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Today is not the best day for the ER. I know they don't do MRI's from the ER but can they do CAT scans or something and will that show anything. Thanks Michelle
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