tommykazim

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! My symptoms were slightly less the few times I was able to remove myself from stress but I unfortunately have tried to keep up appearances and lead a "normal" life and in the process havent had a break from my symptoms in a long time. I read a post recently about how people had successfully got on top of their illness by taking time out which I regret I didnt do but that might be worth a shot.

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!

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 positive for MCA but I have been left with debilitating brain fog and fatigue which I'm hoping wellbutrin will deal with. Thanks, Tom

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!

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 few days. Like you I'd rather not take meds but going organic and spiritual havent helped. I'm in the process of trying to get my paws on Wellbutrin which as Weathermandj mentioned is activating and some seem to benefit from it. BUT we all seem to do differently with meds whether our disease process is slightly different or just because we're different!

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..

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 continue! Keep us posted. Have you tried anti-histamines too? I have in the past for hayfever but did not notice any other benefit from them?

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? Re the auto-antibodies can I ask which of the panel you tested positive to? I want an autoantibody! For the purposes of a diagnosis that would be easier to explain to people and also hopefully more potential for treatment. I worry that if its not it may be a gene mutation which sounds harder to fix! I fear it may be the latter as my mother probably has mild POTS which came about in her thirties. There is a phenomenon in genetics called anticipation where the genetic condition passed on to the next generation then manifests earlier in life (me when 20) and with more severe symptoms - me! However in autoimmune disease, which like everything is probably genetic too, I imagine patients will have varying severity of symptoms whether due to titre of auto-antibodies or other complexities and so perhaps auto-immune can still explain me! I'm seeing an immunologist next month but here in the UK on the national health system it sure aint easy to twist arms into tests or treatment!

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 when we get better we will take over the world?!

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. But why - excess serotonin activate the NET?! Jangle are you wanting to pursue this Rituximab? Have you had any of these dysautnomia auto-antibody tests?

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..

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...Hope your Asics/Nike's get to be used sooner than later! Christy: Sorry to hear your son isnt able to enjoy his sport. Tough to come down with a debilitating illness at that age for him and you. Did I read there is a better prognosis though for kids in outgrowing their condition. Hope that will be the case and he'll be hitting balls out the park again soon! Jen: Sorry to hear you've had a tough year. Interestingly my mother has had for years your symptoms of fainting, dizziness etc and docs also werent bothered. She hasnt - touch wood - though had any worsening of them and just carries on with it. I blame her for giving me a much worse version of what she has! Hoping your body will get itself back to its baseline soon. JP: the viral trigger is interesting. Knowing more about CFS - it commonly precedes CFS. In medicine they talk of "molecular mimicry" where an infection with a virus/bacteria triggers an autoimmune reaction as there is a similarity in structure between the virus and a self-protein. The immune response then attacks "self" in the process. I wonder with raised NE in POTS if this NE transporter thats been implicated in POTS might be the "self" that is attacked?! I wonder a lot, probably too much! Kim, you had to get almost everything in the book for the docs to open their eyes! At least you have a diagnosis now and hopefully treatment is helping. Sif: you werent also in Africa were you and we picked up the same bug?! My BP has settled now even with the attacks of palpitations, not sure why but shouldnt complain. HyperPots: thanks will read up on that article.

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, fatigue and eventually brain fog. Unfortunately I was in the 3rd world where I doubt they've yet heard of POTS. They investigated for phaechromocytoma and more but with no positive findings I was discarded. If others have had a similar sudden onset do you find yourselves in the hyper-POTS subset? Thanks, Tom

Hi all, its natural to want to know what is making one feel ill. Funnily enough I grew up in Africa, in Zimbabwe where I first came down with an out of the blue attack of palpitations, dizziness, chills which kicked off the nightmare that has ensued. I've tried everything, Lymes/ricketsia treatment which didnt help. As other are saying especially with you feeling that much better, let it go. I am struggling now with fatigue brain fog etc and still chasing a diagnosis mainly for a treatment that will work but I'm wondering if whatever triggered my illness is irrelevant and the anxiety with not knowing what was wrong and thinking i was dying etc has done the harm and not the trigger even though I do still get that initial set of attacks from time to time. Some people walk around with arythmias and heart blocks never even knowing they have them not what brought them on. I am going to concentrate now on trying to re wire what has probably become an ingrained anziety which I'm not that conciously aware of. Anyhow enough of me! Move forward, if ever you did feel ill again, worry about it then but that day may never come about so enjoy your health and live life to the full for those of us who struggle to do so!! All the best, Tom

Interesting topic. I first became ill many years back with a sudden bout of tachycardia, dizziness and chills which became episodic, weekly or monthly and still to this day, mostly waking me up at night. Not knowing what was causing it I became extremely anxious and wonder if the years of worry took its toll on my autonomic function. Citalopram has been the only drug to have helped my symptoms interestingly as is used in anxiety however it seems to have lost its effect recently. I do wonder though if the condition causes anxiety perhaps by a reduced blood flow to that specific part of the brain or the anxiety then exacerbates other symptoms...Related or not has anyone been found to have low levels or norepinephrine on catecholamine testing? Mine strangely was, would have expected it to have been raised...

Yes Jana, you're right it could be unrelated, difficult to know with symptoms that arent really text book and not enough known about POTS. But will hopefully let the pro's figure it out! thanks, Tom

Thanks for your replies. trying to think back to when my brain worked a bit better think the abdo sensation was less....Good to hear Hannah the midodrine has helped with brain clarity and energy and yes I too can see why it would by reducing pooling it would improve blood flow to brain and everywhere else that needs oxygen and nutrients...Apparently Ocreotide works more specifically on abdomen blood vessels, wonder if that would have effect on this wierd tummy sensation....Anyway Hannah are you back to a fairly normal life on the midodrine? hope so!

Hi a newbie to this forum, suspect POTS may be my diagnosis though waiting to see a POTS specialist. Does anyone have this uncomfortable abdominal pressure I feel, not related to bowel motions. To me it does feel like it could be abdominal pooling due to vasodilation of gut blood vessels however I am not sure if its possible to feel that? If people have this sensation and have been treated with a vasoconstrictor in particular ocreotide which i read works specifically on mesenteric gut blood vessels has this improved this sensation? Also have vasoconstrictors improved brain fog? Many thanks, Tom