Nauthiz

I get a few different types - ear pain and back of head pain are prettymuch daily issues.

I also get migraines which are always one-sided and based on my left side - but I pray for the pain to start because my auras are truly hellish... I also get daily optical migraine aural things - flashing lights, tunnel vision, visual snow constantly for like years...

Betas making the hypertension worse? You have postural hypertension?

yeah doc said my postural was hyper

another strange thing id like to add too this pretty much all my pain is on one side. I get back pain burning type pain as if acid reflux or something on the back left side of my chest, soemtimes chest pain on left side, also sometimes abdominal pain on left side, like i feel my digestion make sounds on my left side too. Anyone else like this? Except my throat pain is usually both sides.

Does anyone else have this correlation where your headaches always seem to develop in the same spot? It doesn't seem like it is always the same reason for the headaches but they always develope on the back left side of my head and sometimes the left side over my ear.

ALWAYS, never changes place, just intensity. Left side, back of skull, up and over the ear to behind the eye and deep inside the ear. I think it is the trimengial nerve or the occipital nerve or both.

lol thats funny we have it in the same spot! Does your ear ever feel wierd on the inside? Like clogged or something?

Does anyone else have this correlation where your headaches always seem to develop in the same spot? It doesn't seem like it is always the same reason for the headaches but they always develope on the back left side of my head and sometimes the left side over my ear.

i see dr callihan or callahan in tucson AZ, cardiologist he dx me with pots seems pretty smart.

Isnt L-arginine the precursor for nitric oxide (implicated in one form of POTS).

If it is, and it increases neuronal/endothelial nitric oxide bioavailability it may actually help your POTS symptoms.

Yeah L-arginine is a precursor to nitric oxide, in the creatine formula im taking its actually listed as NOS booster. It seems today this product may have made me feel better over all minus the headache which is almost gone now, going to try slightly less tommorow maybe quarter of a scoop and go from there up. It also includes taurine and some other beneficial ingredients and tastes like fruit punch!

Im going to post my results in this thread on how the creatine reacts for me.

I am taking walmarts bodyfortress creatine, it also include L-arginine, taurine and some other amino acids.

The taste was good, i used half the recommended dose for this first attempt 1/2 a scoop i mixed with 16 oz of water.

It was a little hard to drink but i think that is the same for most fluids for me i get alot of saliva in my throat etc.

First thing i have noticed after drinking this i took my heart, for the first time it was somewhat lower. This however i was not expecting, i took my resting HR 3 times, and averaged 68-72 where prior i usually averaged 80-82 range.

Other than that i dont feel too much differnet right now, But i will post a few more times as i take it over the next few days.

For those who don't know creatine helps muscles retain water and is generally a weight lifting supplement.

UPDATE: it appears it has given me a headache! ugh! Hopefully it goes away soon and i can try it again tommorow.

Well title says it all my cardiologist insisted i try florinef and even made me schedule a follow up to take it. Im haven't started yet and i am afraid to start it because i always get side effects. Not to mention one time i had a anaphylactic reaction to a insect sting so i have a inner fear of allergic reactions to anything.. it makes me afraid to try medications.

Does florinef really help? Does it help you gain weight? I know it does put some fluid weight on you but does it help you put on regular weight? My BMI is in the 17's i desperately need to add weight also.

I don't really know what to do to get over this fear, can anyone offer some encouragement or anything, thank you.

nauthiz;

I've had the exact same thing the last few weeks. I think it's seasonal allergies. I'm not effected in the way a 'normal' person is but I believe the sore throat is post-nasal drip and the breathlessness is due to the histamine's vasodialation properties. My BPM has been around 80 supine and 110-130 standing (not running around - just standing). My BP has been 90/40 which says the blood is coming out of the heart just fine but is having trouble getting back from the body. I had acupuncture today in the hopes that it will help. I also have been doing the Neti Pot 2-3 times a day. I can't metabolise meds but if you can maybe try allergy meds.

Good luck!

waterbaby

im thinking it could be post nasal drip too but im not positive, i mean my nose itself seems very clear. This throat flare has also come with excessive burping, and some nausea feelings. I looked at mt throat today it looks ok, but there was like some white mucous stuck on the back of my throat, like pure white, slowly went away with gargling salt water. It really bothersome though, my neck is tight on both sides kind of like where the carotid arteries are, and its sore on the inside of my throat on the side occasionally. Its even difficult for me to drink water at this point it really *****, and i hope it lets up soon. Not ot mention the constant spiting up of clear mucous in my throat.

How is your kidney function? Have you had your serum creatinine checked lately? For "normals" taking creatine does not impair kidney function and only slightly raises serum creatinine, your kidneys make up by excreting the extra. I know I am the odd one with this, but my serum creatinine is high and climbing...which usually means kidney problems. IF you have low blood volume you may have a reduced kidney function (gfr) in which case creatine supplements are a BAD idea. However, if your kidney function is fine, creatine should give you more muscular strength and better heat tolerance. Just have your kidneys checked.

yeah it seems it should be ok i am thinking. Never had any problems with my kidneys that i know of and i did take creatine before POTS. No doctors ever mentioned anything about my kidneys either the last year i did have a few cat scans when i came down with this and lots of blood tests so i should be good to go i would think.

I was thinking about trying to supplement with creatine. I took this product before i got POTS, and it was a bodybuilding supplement that helps retain water in muscle tissue. Has anyone tried this as a treatment for pots? Im thinking about giving it a go now but for pots instead of bodybuilding lol. This is the product i am thinking about getting.... has good taste and i used it before pots...

http://www.bodybuilding.com/store/clabs/mag.html

Sorry that you are going through this. Have you seen a doctor about it?

Sounds like you need an eval..MRI..and/or swallowing evaluation where they view you eating and swallowing. Its not bad. Try to remain calm. I know.. I get the same only I do not make much saliva and take a pill to help me make saliva.

Stay in touch...I am about to have a Endoscopic eval..tube down your throat to stomach thingy...then maybe an ENT to view my vocal chords. I do have lesions on the brain/brain stem

Good luck in finding help

Jan

thanks for the advice, i did have a endoscope several months ago which they said was OK, said i had smal hiatal hernia but thats it.

Lately i've been having more and more trouble swallowing, also lots of excess saliva and neck stiffness. It feels bad sometimes like i cant breathe? What can i do to help this? it is very troublesome for me .

Does anyone get htese i have had sore throat pain for 2 weeks now that waxes and waynes throughout the day including swallowing problems and feelings of shortness of breath? what i can do to stop this sore throat, i tried cough drops doesnt seem to help much. it hurts pretty bad and inflammed, feels like i won't be able to breathe sometimes.

sorry to hear of your families health problems, i hope things get better soon!

let me know what he says because this has been becoming a issue for me too. I have trouble swallowing, lots of extra saliva and mucous at times. Throat also feels very stiff and at times sore and painful. My throat feels so irritated it makes me afraid its just gonna close up!

Hi again..

Its hard to explain, but I find when I eat, I have to deep breathe alot , like I cant get enough air in...maybe its the heartburn, not sure...

add it to the list!!

thanks

happens to me all the time

i hope it works for me also, and i am sensitive so i will try cutting it. What dose do you take? i was prescribed the .1 mg or .1 whatever.

Well after suspiscion of pots/dysautonomia i had my first TTT today. It went pretty easily, did not pass out or another, just some discomfort when i stood up, some chest pain amplified by the tight strap across my chest. I did have a elevated heart rate and blood pressure which adventually went down a bit. My dr said i passed since i did not faint or have any SUPER bad reactions. But he said he still believe i have a some form of pots/dysautonomia, so he prescribed me to take .1 of florinef. So it looks like i do belong on this forum after all lol.

Does anyone get rashes? I lately have had a few that really get dry and hurt and reocurr randomly, i have one on my face by nose usually kind of patchy, then also one in my sternum they both reoccur at random for a week or two each then go away for awhile. Does anyone else experience this or know what it is?

I take "Nature Made Super B-complex," and the amounts are as follows: Thiamin 100 mg; Riboflavin 20 mg; Niacin 25 mg; B6 2 mg; Folic Acid 400 mcg; B12 15 mcg; Biotin 30 mcg; and Pantothenic Acid 5.5 mg.

When I first started taking this B-complex, it turned my urine florescent yellow (I know, TMI....), which meant my body wasn't absorbing a lot of it. But after I took it religiously for a month, this stopped happening, and now I think I absorb it better because my body

I take 2000 IU's of Vitamin D daily. I've tried taking less and it did nothing, and I also tried taking the mega-doses weekly or monthly, and those didn't make me feel good.

You probably already do this, but whenever I try a new supplement I make sure I only try one at a time, and try to keep the rest of the variables in my life as normal as possible for a period of time, so I know if it's really helping or not.

haha yeah i know what you mean about urine color my multi does that. I hope to get my b vitamin soon t try out. I almost doing d-2000 ui a day also but i just started again to see if i notice anything.

I've really found vitamins and supplements to be as helpful as my prescription medication, so I think this is a great topic.

Here's what helps me:

B-complex: helps A LOT with energy (so much so that I can't take it before bed or it will keep me awake!) and helps some with bradycardia

Magnesium: Helps a lot with palpitations -- if I don't take it for a few days I notice a HUGE difference. Also helps with tachycardia.

Vitamin D: has made a huge difference in my sleep and my blood-glucose regulation. I was having wild BG swings and crashes, and I also had horrible insomnia. With the D, I wake up at most twice in the night (instead of six or eight times) and everything about my blood sugar/insulin is now normal. However, I had an actual D deficiency, diagnosed by my doc. I have no idea if this would have been as helpful if I had normal levels of D and just added more.

Zinc: Zinc seems to help me with brain fog, although its effect isn't as noticeable as the other three.

Here's what I've tried that hasn't helped me:

Turmeric: gave me such awful, painful stomach aches that I couldn't take it enough to notice any benefit

Vitamin E: had no bad side effects, but I didn't notice any improvement, either.

Omega 3 fatty acids: I may continue taking these just because they say they're good for your health in general, and I'm a vegetarian so I don't really get them through my diet, but I took them religiously for 6 months and really didn't notice anything different in terms of my POTS symptoms or my mood.

What b-complex do you take? I just ordered Nature's way b-50 complex to try for energy plus i heard it is good for your nerves.

How much VIT-D do you take?

im sure what to say about your symptoms but i also feel like my throat closes sometimes and it is very scary. I am not sure why it does this but soemtimes i can feel a wheezing sensation etc for a brief random period of time. I also have a epi-pen perscribed to me but for allergic reasons to insects, i am afraid to use it as well. Just of curiosity what is the point for throat closings? that could def come in handy.

For those of us with crappy immune systems there does appear to be a link between our nervous system.

In a discovery that demonstrates a clear link between the mind and body at a molecular level, scientists have shown that a chemical signal which normally allows nerve cells to communicate with each other ? to alter sleep cycles, for example, can also re-direct actions of the immune system.

The research in mice confirms mounting evidence from studies of cultured cells that the nervous system directly influences the immune system. It has prompted new experiments to determine if the nerve-generated signal or its receptors in the immune system might make good drug targets to control asthma or allergies.

?This is the first clue of a practical pharmacological approach to using the nervous system for both improving immune defenses and damping harmful immune responses at their roots in diseases as diverse as arthritis and asthma,? said Edward Goetzl, M.D., professor of medicine and immunology at the University of California, San Francisco.

Goetzl is lead author on a scientific paper on the research in the November 20 issue of the Proceedings of the National Academy of Sciences. The work is a collaboration between UCSF and the University of Edinburgh. Goetzl is also senior author on a companion paper on the research in FASEB Journal. (FASEB stands for the Federation of the American Societies for Experimental Biology.)

The finding is based on experiments with ?knockout? mice whose immune cells can?t receive the normal neuropeptide signal known as vasoactive intestinal peptide, or VIP.

In the nervous system, VIP normally stimulates nerve cell signaling and survival, and regulates neural biological clocks. The scientists found that VIP also affects the migration of the immune system?s T cells and T cell secretion of protein signals for other immune cells, both of which are central to the body?s normal defense against infection. Through its action on T cells, VIP can affect the process in which the immune system turns against the body, such as in asthma and arthritis.

In the PNAS paper and in the companion paper in the FASEB Journal, the researchers showed that the strength of the VIP signal received by the T cells regulates the balance between two types of immune T cells, Th1 and Th2. Th1 is normally involved with protection from bacterial invasion and other defenses, but Th1 in excess can lead to autoimmune disorders. Th2 protects from parasitic infections and autoimmunity, but in excess can lead to allergies.

The researchers discovered the effect of VIP on the Th1/Th2 balance by examining the relative production of the Th cells? protein products, known as cytokines. When the balance is tipped toward Th1 in knockout mice lacking a critical form of a VIP receptor, allergy is suppressed and resistance to some types of infections is boosted, along with other reactions, they found.

The research did not determine if the impact of the neuropeptide VIP is sufficient to change the course of infections, inflammation or autoimmune disease in which T cells are involved.

The researchers caution that VIP has such broad effects on immune function that blocking its action with drugs might risk triggering one kind of immune malady while it relieves another. However, the new findings clearly demonstrate the potential of neuroregulation of T cell functions and suggest the potential value of developing VIP-like drugs with greater immune selection than VIP itself, Goetzl added.

Senior author on the PNAS paper is Anthony Harmar, Ph.D., professor of neurosciences at University of Edinburgh. Co-authors are post-doctoral fellows Julia K Voice, Ph.D., and Glenn Dorsam, Ph.D., in the UCSF medicine and immunology departments; and Yvonne Kong, research assistant in the same departments. Also on the study are post-doctoral fellows Sanbing Shen, Ph.D.; Katrine M. West, Ph.D.; and Christine F. Morrison, Ph.D., all at University of Edinburgh.

The research was funded by the National Institutes of Health and the Medical Research Council of the United Kingdom.

Hello All~

I'm having a very hard time right now dealing with my own symptoms, plus a new chronic disease that is very painful. This is enough to me, but unfortunately, we just learned that my main source of support, my fiance, has prostate cancer. His brother died of it at the age of 53. My boyfriend is 55. Next week he goes in for a bone scan to see if the cancer has spread, then a week from Monday we talk with his specialist about setting up surgery to remove the gland, and then radiation treatments, as long as the cancer has not spread.

My main problem is that I probably cannot take care of him while he's going through this, and recovery time is 2-6 weeks. I rely on him to get the groceries and drive when I'm not up to it - which is too often. I feel horrible guilt that he's taken such good care of me, and I won't be able to reciprocate in the same way. I feel awful! He's an English teacher in a high school here, so at least he's off through July for surgery and recovery. I just feel so useless!

Thanks for listening,

Jana

I am very sorry to hear your difficulties. I know life is hard enough considering we can barely do anything. I hate feeling like i need someone to take care of me, but we all do at times, it really *****! I hope your fiance is ok and the cancer is not too difficult. Im sure you will make it through together just gotta stay positive, and i know how hard that can be.