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About tommykazim

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  • Birthday 08/15/1975

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    London, UK

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  1. Like NMPotsie I never suffered with anxiety before illness but my illness started with an attack similar to a panic attack but not! What followed were more of these attacks (now interestingly I get them every month or so but only at night and about half an hour after falling asleep??) and an underlying constant anxious state but I think its due to a disease mechanism of excess norepinphrine and why I and others are often investigated for phaechromocytoma. I used to be the most laid back person I know/knew but now a stress ball who cant handle slightest stress and with it cannot make decisions!
  2. thanks ashley, yip topping up my neurotransmitters with SSRI/SNRI's, when they have worked, have helped all of my symptoms which makes me think thats wherein my problem lies. Unfortunately they then stop working and so dont seem to be reversing the actual disease process. But if it buys me some quality time while they figure things out then I dont mind, they just need to hurry up! Hoping your MCA treatments are kicking in to good effect!
  3. Hey ashley, just a quick question(s) about your being on wellbutrin. Was that started primarily for your MCAD and if so why do they think it is useful and has it been useful for you? I'm trying to get on it - in the UK and you'd be shocked at how difficult it is to get on specific treatments. My illness has gone on for over ten years and with it there seem to have been phases. Initially I too felt I was in a hyper-adrenergic state and had episodes of flushing most noticeable on my chest, no hives but dermatographia. Those symptoms though have faded over the years and so I doubt I would test p
  4. No probs, I've never had issues with pain but I can imagine it causing much stress and perhaps that contributing to brainfog. Here in the UK they have chronic pain docs who approach pain from all angles, from acupuncture to tens machines, to cbt, to meds. Hope you get it under control soon and brainfog goes on holiday with.it!
  5. Hi nowwhat, my most debilitating symptoms are brain fog and fatigue and so have focused (as much as I can!) on trying to relieve them. Two drugs have been successful: Citalopram and cymbalta (not together). Citalopram for a good 4 years before pooping out. Cymbalta gave me 4 months of my life back however was very dizzy on it. I have tried taking these again after a long break from them but to no avail. I tried stimulants Ritalin and modafinil which helped only for a few days. Didnt get on with effexor nor the other SSRIs. The supplement L-carnitine and B12 gave me a boost but again just for a
  6. thanks Issie for the info on genes. Tempted to put mine under the magnifying glass even if just to blame my parents for my wonkiness, perhaps they will be a bit more understanding if not guilty! I'm broke though so until then they're scott free! Interesting this mast cell angle, I dont know if its part of my pathophys but hopefully it'll explain it for some and the treatment will be effective. Aspirin interestingly for me keeps migraine aura at bay?! Anyhow back to the drawing board..
  7. Do you think the genetics of people with POTS will become a diagnostic marker even if it produces a number of subtypes? I'm not that clued up on genetics but your linking your genetic profile to your illness is that by a particular gene coding for a particular protein which if not working causes a specific symptom? Like the gene which codes for NET? Yes there do seem to be many associations with POTS which I'm sure one day will make sense as to why they are. Great you have had some response to the gastrocrom and yes I too dont get too excited unless positive effects last but long may they con
  8. Yes Issie they arent far wrong with laughter being the best medicine, more pertinent for us when no other medicine works! If only my brain fog would allow for more of that laughter! I havent either read up on this mast cell theory. In the first 5 years of my 15 year illness I did have that episodic flushing phenomenon with dermographia though no GI upset and developed hayfever too?! My orthostatic tachycardia was much more prominent then, less so now, brain fog and fatigue are now in joint first place. Do you have flushing episodes? Have you noticed any improvements since being on Gastrocom?
  9. Hi Issie, I'm interested in pursuing the autoimmune theory of POTS and hoping to get tested for the various dysautonomic antibodies. You mentioned you've tested positive. With that are you and your doctors keen to try you on autoimmune therapies if you havent already? It doesnt seem like doctors get too excited about a positive auto-antibody test in POTS to then whisk us off for treatment as say they would in Myasthenia Gravis? Do you know why this is? I dont imagine the healthy population have auto-antibodies and so it should be relevant if we test positive. A conspiracy?! Do they know that w
  10. hi guys I did try a NARI - Rebexotine. And yes Jangle I wondered if it would make matters worse for me even if I havent had my NET gene tested. Have you or others had this gene test? But yes I had had a response to a SNRI and wondered if the "N" of it was part of the trick! For the first few days felt like I was on speed - blocking the few NETs that work and flooding myself with norad! couldnt sleep a wink which was a blessing from my usual zombie state. But thereafter slowed down, felt worse, got palpitations and quit it. So it was prob the serotonin blockade of the SNRI that did the trick.
  11. Hi, can I ask people on Mestinon if they were put on it from having tested positive for ganglionic acetylcholine receptor antibodies? Wondering if I should get tested for these auto-antobodies and if positive then treatments like Mestinon may work for me..
  12. Thanks all for your replies and sorry for taking so song to say that! Been a trying week but then when isnt! Hhomes: Yes frustrating it is - I wasnt a great runner but would have liked to have achieved a marathon - it is on the list for WHEN I recover! I spent a lot of my time in the pool - swimming/waterpolo/triathlons - when my body knew no limits! It is puzzling as to what brought this sudden change in how our bodies work (and now dont!). The CFS lot are being led down the autoimmune path after having had some interesting results with treatment. I wonder if will be the case in POTS too...H
  13. Hi, I'm new(ish), joined back in the day when I thought I had POTS and then was labelled with CFS so defected to them! I'm convinced though that the beginning of what has been 15 years of struggles though was POTS and so I'm back! I'm aware of the overlap. Just wondering if the onset of my illness is similar to others? It was sudden. I was otherwise very fit and healthy (physically and mentally). Out of the blue I experienced an episode of palpitations, chills, impending doom - only finding was a sky high BP. This happened again and again, increased HR on standing set in as did anxiety, fatig
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