Anxiety, Hyper Pots And Nor-Epinephrine

[diamondcut]

Jangle.......

Where you have spoken about NET expression being the main source of the problem and not the NE levels as such, could this explain why some potsies like me can manage exercise at the time!!! Lets say 15 minutes on an exercise bike for example, I would reach a pretty high heart rate as you would expect, but the real trouble of racey tachy and that unerving wired feeling comes on anything from an hour or even sometimes 3 or 4 hours, or just once you have stopped what you are doing for the day and are sat on the settee in the evening and your body feels like its on the bike still. Is this because the defected NET gene can not get rid of the extra adrenalin you had to use on the bike earlier and its floating around the system? If the is the case do you think they will be able to mimic this NET gene in time!!!

[diamondcut]

Jangle, how do you find these articles? I wonder if my endurance training background is why I tolerate my NE levels in the 2000, because I am desensitized to the vasoconstricting effects? Even with my NE levels that high I don't have " panic attacks", or palpitations, clammy skin or high HR. My HR runs in the 40's, my BP 90/60. I just started a low dose of Clonidine along with my salt and fluid, and have been walking everyday for the past month despite feeling like death. So what would do the opposite of a NET?

I have my ways, but it appears I was beaten to the most exciting POTS research to come out - which was the autoimmunity study just published this week.

I should think you feel pretty pi**ed at the idea that your scientist of the year award has been snatched out of your hands!!!!! And your a willing guinea pig too!!!

[diamondcut]

This is kind of off topic but there was a really interesting tv show on in the UK today where they conducted the first real indepth study of the effects of ecstasy or more specific MDMA. It has never been officially looked at, and the amount of positive things they could perhaps help people with with controlled substance of pure MDMA sounded promising, especially for things like depression and post traumatic stress disorder etc, it made me wonder if MDMA could help in some pots cases with the effects on seritonin etc. Not sure on the heart rate though!!!!

[issie]

Jangle.......

Where you have spoken about NET expression being the main source of the problem and not the NE levels as such, could this explain why some potsies like me can manage exercise at the time!!! Lets say 15 minutes on an exercise bike for example, I would reach a pretty high heart rate as you would expect, but the real trouble of racey tachy and that unerving wired feeling comes on anything from an hour or even sometimes 3 or 4 hours, or just once you have stopped what you are doing for the day and are sat on the settee in the evening and your body feels like its on the bike still. Is this because the defected NET gene can not get rid of the extra adrenalin you had to use on the bike earlier and its floating around the system? If the is the case do you think they will be able to mimic this NET gene in time!!!

My sister who has CFS and OI saw one of the world known top notch docs this week in Salt Lake City. She was shown a study on people with CFS and FMS and a comparison of exercise. Both when they do it and the delay reaction. She showed me the graphs. Amazingly, people with this - they can measure different pathways and what they are doing. CFS people are less efficient with exercise tolerance and recovery than a person with MS. The graphs were amzing. Since CFS and POTS are so closely connected ---it would be interesting to see a POTS person compared in this study.

Issie

[Zap]

Jangle.......

Where you have spoken about NET expression being the main source of the problem and not the NE levels as such, could this explain why some potsies like me can manage exercise at the time!!! Lets say 15 minutes on an exercise bike for example, I would reach a pretty high heart rate as you would expect, but the real trouble of racey tachy and that unerving wired feeling comes on anything from an hour or even sometimes 3 or 4 hours, or just once you have stopped what you are doing for the day and are sat on the settee in the evening and your body feels like its on the bike still. Is this because the defected NET gene can not get rid of the extra adrenalin you had to use on the bike earlier and its floating around the system? If the is the case do you think they will be able to mimic this NET gene in time!!!

I certainly have noticed the phenomenon that getting wired can have adverse effects later on. Funny thing, though, is it sometimes helps combat the general fatigue that comes along with things, too, which may be why exercise helps some cope better, depending on what combination of symptoms come on. This is one of the reasons I'm interested in the COMT pathway, as it helps get rid of the NE. Balancing this, would in theory get rid of the "vicious cycles" because there would be proper feedback.

Speaking of which, I had a really bad surge two nights ago that didn't really make sense. I got super jittery and my heart felt funny, but checking my pulse showed that it was low, like 50's low. Granted I'm on the beta - but that was bit odd, made me short of breath, too. During my reading, one article that was by Dr. Grubb talked about Hyper-POTS behaving very similarly to Pheo, given the hyperadrenergic state. I was really curious if additional alpha blockade might help this, or if this is why the Pamelor was helpful with some of my symptoms, given its a1/a2 antagonism. It goes without saying that you never treat a Pheo with beta blockers alone, so I would argue that Hyper-POTS should likely be treated in this same way.

I also would think that the lack of balance in the transporter could be the reason the catecholamines surge - another example of some place where balance is critical for feedback loops to work properly. I would think there has to be a way to figure out what exactly is causing this functionality issue.

[issie]

Surprisingly, I don't have a COMT mutation and my pathways ----at least according to science ----should be working properly. Now whether that is true, who knows. But there can be some other mutations in the mehylation pathways that causes short circuits in function. This is what I'm researching at the moment and think that this has something to do with things. I'm not convinced that this will be "ALL" the answer. But, maybe a piece of the puzzle.

Issie

[diamondcut]

I forgot to mention, when i had my stress test months ago, i had to cycle for 10 minutes and they kept me there for an hour after and i was fine, 3 hours later it was like someone was sat on my chest and i couldnt breath, thats why i am so scared to to do any real exercise apart form fast walking. There has to be a reason for such a serious delayed reaction

The study that MS patients recover better than CFS pateints is incredible! I cant understand how or why that would be, MS surely the signals from the brain, nerves and muscles would be more deteriorated or effected in a bad way than that of a CFS patient. Like you said CFS and POTs are so a like and no doubt many CFS people have undiagnosed POTs. There has to be a major floor that they are simply missing here.

Zap, what briefly is COMT and what are you doing about it?

Just to let you all know i am seeing a geneticist next month so if there are any question you would like me to get them to investigate please PM me.

[diamondcut]

Also Zap you say you are on Nortriptyline, i am on something very similiar but i can garentee if i go abouve 50mg it makes my BP drop and tachy even worse, its dreadful but at a 10mg dose it does help.

Also while we were talking about NET and pathways and compensating etc, i wonder if that would explain why so many Dr 's i know always think for hyper POTs Clonidine is the cure! Then they look so surprised when you tell them in actual fact i was more fatigued and dizzy on it than off it!! I suppose its lowering the NE levels which isnt really the problem if the idea of the transporter cells for NE are whats lacking . would this be correct? or am i way off.

[issie]

I suppose its lowering the NE levels which isnt really the problem if the idea of the transporter cells for NE are whats lacking . would this be correct? or am i way off.

Awwww, diamond, you made me have a light bulb moment ---what if because there are so many pathways and hormones worked on with Tramadol ---with me ----maybe it causes the NET to function properly?????? Since it is a NE reuptake - it would make it circulate higher and hold on longer before elimination ----but, since there could be a faulty connection somewhere else in the line and this works on serotonin, dopamine, NMDA, and opiate receptors - maybe the tweaking of one of the other things - pushes the NE transporter to function properly on me. OKay, now I'm way out on a limb!!!! But, what if that's what's happening with me??????

To answer your question ----whose to say that lowering NE wouldn't be another alternative way to treat high NE levels? If, it's lower and there is less to process then the transporter doesn't have to work so hard to pump it out. Think of a garden hose attached to a pump ---if the garden hose is small and the hose is turned full blast - it has a lot of volume to disperse, high pressure load --- but only so much can go through at a time. If the pressure is turned down and the volume amount is lower then the hose still delivers the same amount - but, it doesn't have the pressure behind it to try to deliver more - faster - causing a build up on the back side of the line. I hope that makes sense to people ---ha!ha! (I've learned quite a bit about this sort of thing over the years. , my husband's in the pump biz. )

Issie

[Zap]

COMT is one of the pathways in the methylation cycle which breaks down NE and Dopamine into their metabolites. SAMe is used in this process as a methyl donor. I'm not currently doing anything at the moment, though I tried supplementing with SAMe in the past to see if I needed more of it. Unfortunately, I think that was a failed experiment, as I couldn't determine if the meds I was on at the time contributed to the side-effects I saw. I would like to try again without anything else that would possibly interact in a negative way. I also think it needs more research, as it may be a target area where there is a defect of some type.

I was on Nortriptyline - it worked great to stop my chronic migraines, but it made me horrible in almost every other way. My heart raced, my blood pressure was high, I had an insatiable appetite, and I had bad orthostatic intolerance. This was all from a 10 mg dose, ha! I'm super sensitive to most meds, but this was a new side-effects fiasco. In theory, most of the bad side-effects are due to the effects it has on the mACh receptors. I've considered whether another tricyclic that might have less mACh activity may help me, not sure if there still would be side effects, though.

[diamondcut]

Thanks for answering both my questions Zap and Issie

Issie, yes thank you for the NE analogy and thank your husband too lol, i do understand what you were putting over with the more you can lower the NE levels the less the transporter cells have to work and therefore the function is improved. If i remember rightly you have been tested for NE levels that are high in your blood? Could you maybe do these 2 things.

- Could you try a low dose of Tramadol everyday and try not to take as many of the other supplements or meds you are on to see purely what the Tramdol does to you?

- If indeed your NE were proven to be high, could you take tramadol and the have your catecholamine levels tested whilst the tramadol is in your system to see what the bloods would say. Have you looked into other drugs similar to Tramadol to see if there are others which may "tweak" you even better!!

I know we both tried clonidine at the same time recently and for different reasons came off of it. I had no energy at all on it, would love to know why.

Zap

Again that is so strange with the Tricyclic, they are renowned to lower your BP yet it did the opposite for you!! If you are going to try the SAM-e again please let me know how it goes again. Did it make your migraines worse at the time can i ask?

[issie]

Diamond,

I've already tried your first suggestion. And will consider trying the second one. I'd have to get the doc's on board with a repeat test on Tramadol. It would be interesting to scientifically see if this is what is happening.

Yeah, clonidine really helped my drastic swings in blood pressure and surges ---but, I was really tired on it, too. I will, however, use it again if my blood pressure starts back with those swings. It balanced that out.

Issie

[hippychic258]

Diamond,,, I to have such delayed reactions to exercise also, before I had this flare I would exercise in the morning and be fine until late afternoon or evening then I would be so sick, I tried to explain this to several doctors and they said there was noway that was possible and it couldn't be from the exercising. It didn't happen when I didn't exercise and I knew it was form that. Any ideas what causes that??t

[jangle]

Diamond,,, I to have such delayed reactions to exercise also, before I had this flare I would exercise in the morning and be fine until late afternoon or evening then I would be so sick, I tried to explain this to several doctors and they said there was noway that was possible and it couldn't be from the exercising. It didn't happen when I didn't exercise and I knew it was form that. Any ideas what causes that??t

Ask your doctor, as it could be an increase in cytokines after exercise. http://jp.physoc.org.../3/949.full.pdf

It's well known that exercise will lead to a substantial transient increase in both inflammatory and non inflammatory cytokines. The logical leap is that in POTS and CFS patients who might already be undergoing an autoimmune disorder, this increase is sufficient to increase symptoms substantially, or perhaps the rise is even more dramatic in these patient populations.

Just a theory.

[issie]

See the study/slides I posted under CFS and exercise. Proves there is a delayed reaction in CFS and FMS. CFS is so closely tied into POTS ---probably would apply to us too.

Issie

[issie]

Jangle,

You would like that study. It not only shows on a graph the cytokines but different markers of response with other receptors and markers and a time line of how the increase and decrease of those things are in a time frame. As I mentioned on that thread, my sisters doc thinks the main thing that they need to look into more is Adenosine receptors. That's where the most response was.

Issie

[diamondcut]

Have they recommened any treatment for you sister yet?

Jangle,

what your idea be to try and decrease these cytokines? Or is it an unpredictable pattern that taking a drug to decrease constantly would make you feel worse? Did you have any more luck looking for a Nuero, i read a post earlier where you mentioned you found one that claimed to deal with POTs everyday, which made you frown a bit. How did it go?

[diamondcut]

Diamond,

I've already tried your first suggestion. And will consider trying the second one. I'd have to get the doc's on board with a repeat test on Tramadol. It would be interesting to scientifically see if this is what is happening.

Yeah, clonidine really helped my drastic swings in blood pressure and surges ---but, I was really tired on it, too. I will, however, use it again if my blood pressure starts back with those swings. It balanced that out.

Issie

Diamond,

I've already tried your first suggestion. And will consider trying the second one. I'd have to get the doc's on board with a repeat test on Tramadol. It would be interesting to scientifically see if this is what is happening.

Yeah, clonidine really helped my drastic swings in blood pressure and surges ---but, I was really tired on it, too. I will, however, use it again if my blood pressure starts back with those swings. It balanced that out.

Issie

I can hear the Dr's already "but if the symptoms are improved, whats the need to test?!" I think someone like Driscoll or Grubb would prob be your best bet.

[diamondcut]

Diamond,,, I to have such delayed reactions to exercise also, before I had this flare I would exercise in the morning and be fine until late afternoon or evening then I would be so sick, I tried to explain this to several doctors and they said there was noway that was possible and it couldn't be from the exercising. It didn't happen when I didn't exercise and I knew it was form that. Any ideas what causes that??t

I to have such delayed reactions to exercise also, before I had this flare I would exercise in the morning and be fine until late afternoon or evening then I would be so sick, I tried to explain this to several doctors and they said there was noway that was possible and it couldn't be from the exercising. It didn't happen when I didn't exercise and I knew it was form that. Any ideas what causes that??t

[/quoteI do not understand why the Drs wouldnt believe this, i have immediate problems when i lift my arms for too long as far as physical activity goes on a daily basis, thats far worse than standing for me, but i can very often push myself through the day becuase i want to go somewhere and do something! I of course pay for doing that with a serious migraine as well as terrible Tachy. Someone else said on here that it could be to do wit the body re-building the muscle that was used earlier. Like your body still thinks and acts like it is in exercise mode even though it is not. Confusd signals again.

[diamondcut]

Sorry something strange happened to my post then hippychic, my reply is tagged on to yours above!

[issie]

Actually, it appears that Dr Driscol's ideas with the Diamox ----won't be for everyone. I tried it and got really sick from it. I think because I have sulfa issues. Diamox is a sulfa drug. It helped with my head and eye pressure but couldn't tell that it did anything for my POTS. In fact, I got so bad I could hardly walk, got shortness of breath, muscle weakness and complete fatigue. Now whether or not that was related to the sulfa problem or it just wasn't the right thing for me -----whose to say. It works similiar to topamax and one of the side effects of that med is muscle weakness too.

Yeah, kind of think that myself. If it's not broke ----don't fix it. Just sometimes science data might be interesting. I guess if they later want to do a study on it ---I'm game to do the test. But, probably will just continue to wonder "WHY" it works but not have the science behind it.

Dr. Goodman is giving out the protocol for MCAS these days. I will be picking up my gastrocrom tomorrow. He also is saying to take an aspirin and allegra and pepcid. So, will be trying out the gastrocrom ---one thing I haven't tried before.

Issie

[Zap]

Diamond,

Yeah, I have all sorts of reactions to meds - nothing surprises me anymore. Even at the migraine clinic they don't give me normal doses anymore. I'll definitely mention if I try the SAMe again. As far as I could tell, I don't think it made the migraines any different, but that was also during the nortriptyline, too. It might be different off of that. Too many Serotonin things stacked plus something else on top of it was not a good combo.

[jangle]

diamond, I made the appointment to see that neurologist, but it takes a month to get in, so I'm still waiting.

[kitt]

I suppose its lowering the NE levels which isnt really the problem if the idea of the transporter cells for NE are whats lacking . would this be correct? or am i way off.

Awwww, diamond, you made me have a light bulb moment ---what if because there are so many pathways and hormones worked on with Tramadol ---with me ----maybe it causes the NET to function properly?????? Since it is a NE reuptake - it would make it circulate higher and hold on longer before elimination ----but, since there could be a faulty connection somewhere else in the line and this works on serotonin, dopamine, NMDA, and opiate receptors - maybe the tweaking of one of the other things - pushes the NE transporter to function properly on me. OKay, now I'm way out on a limb!!!! But, what if that's what's happening with me??????

To answer your question ----whose to say that lowering NE wouldn't be another alternative way to treat high NE levels? If, it's lower and there is less to process then the transporter doesn't have to work so hard to pump it out. Think of a garden hose attached to a pump ---if the garden hose is small and the hose is turned full blast - it has a lot of volume to disperse, high pressure load --- but only so much can go through at a time. If the pressure is turned down and the volume amount is lower then the hose still delivers the same amount - but, it doesn't have the pressure behind it to try to deliver more - faster - causing a build up on the back side of the line. I hope that makes sense to people ---ha!ha! (I've learned quite a bit about this sort of thing over the years. , my husband's in the pump biz. )

Issie

Issie,

This is so interesting about the tramadol. I was taking it for another mast cell disease which causes pain, and was happy when I didn't need it as much. Now I'm realizing I had 'more energy' when I took it.

Right now I wake up all through the night with adrenaline surges, as well as bone pain. The adrenaline surges at night are bad, and it's hard to get back to sleep without taking a muscle relaxer.

I can't sleep on tramadol. I'm one of those who has the 'opposite reaction' to some drugs. For instance a sleeping pill will keep me wide awake.

Any more ah-ha moments about tramadol?

Am having a horrible time with total exhaustion and can't keep up with the doctors appointments.

Thanks all..

[kalamazoo]

I share the same story. I jist turned in my urine for my pho testing, I know a lot of pots patients get false positives, ill post my results here. You shoulf maybe be testing for hyper pots.