I decided last week (in light of my negative western blot from an FDA approved Lyme lab) to properly crack on with migraine treatment. So I called last week and saw Dr S yesterday. He was brilliant. Reassured me that (though not his area of expertise), he’d advise scrapping the Lyme diagnosis and pushing on with migraine treatment.
I have started gabapentin, 100mg for a week, then 200, then 300. He re-iterated that only a handful of his patients are not now living normal, active lives. He said I need to aggressively get the migraine under control now. He said meds, lifestyle changes and reduction of stress are all like plasters that allow our irritable brains to heal. I was worried about muscle twitching, he said its because I feel like I’m walking on ice, so all my muscles tense up, and are over worked, thus tire and twitch. He also explained why I experience pins and needles, as the natural anxiety of all this leads to shallow breathing, thus physiological carbon dioxide levels are disrupted, leading to constriction of blood vessels to the brain, which in turn leads to light headedness and a detached feeling.
He has referred me to a respiratory physiotherapist and to have a hormonal check up (in case it’s a contributing factor). He said finding the right med at the right dose is like a switch being turned off…he also said most patients have good days and bad days that eventually just become normal days as we heal…so all very positive and good. Thought I’d fill you all in! He also said pregnancy is usually protective and makes people feel better during, but symptoms may return afterwards! All very happy for me as I’ve been married for 3 years and would like a baby now !!! He said he’d advise I get myself at least 30% better before trying. Xxxxx
thanks for sharing lizzie- sounds like you had a good appointment. So do u think the lyme treatment did anything at all or was it placebo or just a coincidence?
I can’t believe he said only a handful of his patients are not leading active and normal lives- not to be a downer but I sincerely doubt that…but then again maybe there are a ton of success stories out there that never make it to this forum.
Hey! I just can’t say. I did get much better, I don’t think it was placebo as I never improved on nori or propranolol and was v optimistic about them but who knows! I think this forum is amazing but probably does represent a skewed population of MAV sufferers…as once people are better they leave and live their lives…we see more chronic cases here, and yet many have still had success. I think it’s about pushing on with the meds…I am v hopeful and positive. Xx
do you think it is possible that you had lyme and mav and now that maybe the lyme is treated the other symptoms are from mav?
i would kill to see dr. s. as he is so confident about treating the condition unlike my dr. did he say anything about how many meds people usually go through before they find one that helps?
you are right this forum represents either the most severe forms of this or the most chronic. although like you said i think there are ones on here who do well and leave for good. i just wish they would come back and tell us they are doing well.
random story i was talking to a former neighbor recently and she mentioned that she once had vertigo for a month and then it went away. i mentioned what i have and how it is treated with migraine meds and she immediately started talking about how awful her migraine headaches are. i think her vertigo was probably mav but she just had a random episode and it just disappeared for years. that lady would never probably have even found this forum because it went away before it truly affected her life long-term. i wanted to say to her i think you have what i have but i didnt want to scare her!
Thanks so much for sharing! Did he say why he chose Gabapentin? I also want to know how many meds most of his patients have to try to find one that works.
Sarahd, I believe that almost all his patients improve dramatically, just look at his success rate here. And, keep in mind, this forum is the problem children. Normal people get this stuff under control and never have an interest in joining a forum about an illness that doesnt impact their life. And there are plenty here that recover, they just dont stick around cuz theyre busy living.
Very happy for you and glad you had a productive meeting with Dr S. I’m looking forward to you finally turning this around. I would bet the farm that all of these strange neurological symptoms will resolve once you get your migraine back in the cage.
I’m being picky here but I would suggest that “heal” is not the right word to use though it sounds heart warming. It’s really all about increasing our threshold for migraine and living below the trigger line which requires lifestyle modifications, awareness of what we are dealing with and often a migraine medicine. If that is a proxy for heal then cool by me.
So do u think the lyme treatment did anything at all or was it placebo or just a coincidence?
— End quote
It was a red herring because of Igenex testing. I can’t prove it but there is a great deal of suspicion about this test churning out false positives which it clearly has in DL’s case on multiple bands.
Thank you so much for sharing, I love reading positive stories like this. It makes me that much more confident that I can beat this when a doctor such as Dr S says so. His comment about pregnancy is awesome, I’m 24 so one day wish to have babies and was a little concerned about it, that I would finally get things under control and pregnancy just bring it all back. Wishing you luck and keep us posted!
Hey Lizzie, did Dr S say you need to be 30% better than you are right now before you consider having a baby? Did you give him a percentage of where you are at now?
I’m glad your getting to see Dr S, he’s an excellent doctor and a nice man.
Don’t doubt what he is telling you, doctors are always told to set realistic expectations for patients and you normally find that they air on the side of caution. So for him to tell us that he’s treated thousands of patients with this and only a handful haven’t recovered is very good news indeed. He said the exact same thing to me.
He also said that it takes time and that in a sense it’s a bit like trial and error with the meds as what works for one doesn’t always work for another. He told me that gabapentin and topamax normally get through this like a knife through butter. He prescribed Gaba to me but unfortunately I couldn’t tolerate it.
Try to stay positive - I’ve got into the habit of only reading positive posts on the forum now and have found that really helps. Reading over the success stories when feeling down also helps, you spot things you didn’t before.
I’m lucky enough to know 2 people who have had this condition. 1 made a complete recovery and the other is now at 95%. We can and will beat this thing.
Hi Dean
Thanks for your positive post! I’m looking for a med to add to my Topamax and wondering whether Gabapentin might be the one. Is Gabapentin the brand name? Are Lyrica & Neurontin similar? Thanks.
DizzieLizzie
Thank you too for telling us about your appointment. It is good to get the positive feedback. Good luck with the gabapentin.
Barb
Hey Barb, I think you can take Topamax and Gabapentin together but they are both anticonvulsants. Dr Silver prescribes gaba for sleep improvement as it does make many people drowsy and he uses topa as a first or second line migraine preventative. Dr Surenthiran seems to like to try gaba before topa. He does seem to add it to other meds like nori but sometimes he seems to prescribe Lyrica as a first line med. I believe Lyrica is the new and updated version of Gaba (neurontin) but Lyrica is a lot more expensive so maybe why gaba is still used quite often.
Dean, are the people you know who had MAV and are now recovered from this site or do you know them in person?
Jem beat me to it but Gabapentin is the brand name of neurontin and it is similar to topirmate (topamax) in that its an anti seizure med. I can’t recall seeing them being taken together. Pizotifen seems to be a winner for a lot of people and is designed specifically for migraines. It alters 3 of the chemicals sent to the brain which cause migraines, including histamine. I’ve had a lot of problems with my sinuses through this, also itchy runny eyes. Right from day one. I’ve got a sneaky suspicion that this med may be the one for me - with my limited knowledge. To add to this syndol is the only painkiller that seems to work for me, when I checked the ingredients it contains doxylamine bucinate - an anti-histamine. I think my body may be producing too much of this… Pizotifen is next on my list. Lets hope it works.
Jem, no I didn’t know them from this site. One lady - Yvette went camping and met with my parents. They got talking and found she had same thing as me. She was suffering worse than me, she used to walk with sticks as her balance was so bad and used to knit often to try and focus. I met her a few weeks back and she was walking normally, wasn’t sensitive to light was bright, cheery - normal in fact. She had worked up to 100mg of Nori but noticed a major difference when pizotifen was added to the mix, 8 weeks later she’s virtually there. It had taken her two years to get to this point as she like a fair few of us was mis-diagnosed. She had to leave her job as a district nurse but is now back on track and looking to foster children. I felt much more positive having seen/spoken to her.
The other chap, I haven’t met yet but am trying to. He’s a friend of my wife’s, friends husband (if that makes sense). He was diagnosed with vestibular migraines, missed 6 months of work ( he was a self employed sparky) and is now back to full health and off the meds.
Thanks all! Keeping positive!!! Scott the ‘heal’ was Dr S’s word…that’s a direct quote. I know what u mean tho…here’s hoping things do get under control! Xxxx
Sarah…not sure about Lyme. I’m going to continue learning about it but I’m inclined to think that the Igenex test is overly sensitive to be honest. Western blots are essentially subjective…they have an ‘indeterminate’ reading so I am guessing they over diagnose positives. Jem and Krystal…Dr S said I could look at pregnancy in 2 ways…either try now as it’ll probably be protective and diminish my symptoms during pregnancy and breast feeding or I could give myself a 9-12 month window to do meds and get into a better place so I am better able to cope with the pregnancy…which is what he’d prefer, thank u for all the positivity Dean! He didn’t say why he chose gabapentin…I’m going with it tho! Determined to get to a high enough dose to improve this crap! If the migraine meds work then Lyme isn’t my issue… But I’m inclined to think it isn’t anyway!!! Xxxx
Hi Dizzylizzy,
I was reading through the posts and saw yours saying about possibly needing 2-3 meds to help kick this.
Do you also get the derealization, detached feeling like you’re not there, like you’re not one with the world and almost like between consciousness?
I was wondering what meds have helped you.
Thank you.
Nicole
I have the depersonilisation - Dr said to me that it goes hand in hand with this condition (I’m afraid). It can be quite frightening if you focus on it too much… but is all very normal and will dissapear once the migraine is controlled.
