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New here and looking for input.

Discussion in 'General Symptoms' started by kinshealth, Jan 3, 2013.

  1. kinshealth

    kinshealth

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    HI all,
    I'm new to this forum and so glad I found it! I"m 30 years old with 2 small children. Starting In June my health really took a nose dive. No one can give me answers so hoping someone here can shed some light. I'll keep it as short as I can.

    In June I began having pressure time headaches, like my head was in a vice. This lasted for 2 weeks straight and really stressed me out. I had a CT and MRI of my head with normal results. Those headsches slowly disappeared coming and going every so often. BUT I developed weakness, panic attacks, adrenaline surges,anxiety,rapid heart rate, chest tightness,shortness of breath,hyper,hair loss and severe fatigue. I went to 4 cardiologist and they performed every test besides looking inside my arteries and all was normal. This lasted 4 weeks then I suddenly felt better. Felt great through JUly and part of august until suddenly I developed severe abdominal/intestinal issues. I was having severe nausea, stomach pain, constiaption/diaherrea, urges to have bowel movements but nothing and no appetite. I had abdominal CT,endoscopy and ultrasound but all was normal. Then maybe from stress all my previous symptoms returned. Lasted for a few weeks then I started to feel better again. I finally demanded more test and did get diagnosed hpothyroid, low sodium and potassium and I have low cortisol. I have to take my thyroid meds in the early am hours otherwise I can't tolerate my meds.
    I've been on thyroid meds for awhile but still not feeling well. I crashed again about 4 weeks ago for 4 days. I was bedridden and just getting up shot my heartrate to 130(blood pressure has been good) which caused severe weakness, nausea, hot flashes, and shortness of breath. I drank electrolytes this entire time to help. ER diagnosed me with POTS and sent me home. This crash also happened a week after my grandfather passed and right before holidays so it seems stressed triggered it again.
    So now even though I'm not feeling horrible still never feel good. Everything seems to be a task, i'm weak,often have severe heart palps that they keep me up, still get head pressure at times, and short of breath often. However my digestion has returned to normal. I have MTHFR, CBS, and few ohter SNPs.

    Could this be pyroluria? Lyme? I can't believe this is all tied to low cortisol and hypothyroid like my doc thinks. Any ideas on what my next steps can be??

    I also can no longer tolerate coffee or alcohol. The coffee will make me extremely jittery. Alcohol makes my heart go nuts!
  2. Esther12

    Esther12 Senior Member

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    Are you seeing anyone about your POTS? It would be worth getting advice from someone who really knows what they're talking about with it. Have you looked into specialists for it?

    Could it be that you had a few things wrong with you that are hopefully gradually being sorted out (thyroid, sodium, POTS) but this has left you feeling run down, stressed and exhausted? It sounds like you've had a lot of things go on in a relatively short space of time, and that some of your problems only started being treated quite recently - it could be that it will just a while for your body to get over it all.

    At this point, I think that you'd be better off putting your energy into doing nice things and taking care of yourself (like one would after an operation or something) rather than looking into things like a possible Lyme infection. It could well be that you will have ongoing problems with POTS too, even if it is being treated. A lot of your symptoms sound related to POTS to me (I don't really know what I'm talking about though).

    Welcome, and good luck.
    charlie1 likes this.
  3. charlie1

    charlie1

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    I agree with Ester12. Like you, I'm new to PR and have been experiencing symptoms similar to your since June. My story is quite similar to yours really so I do understand how this can be scary stuff.

    It took 3 months of agonizing symptoms before the possibility of my issue being POTS was mentioned by the endocrinologist I was seeing at the time (to rule out Addisons Disease). He referred me to a neurologist specializing in dystautonomia to rule out MSA (Shydragers) and other biggies. Soon I will have tilt table testing to positively diagnose POTS. How did the ER dept. diagnose you as having POTS and did they give you ANY suggestions on how to proceed?

    Having a dysautonomia diagnosis can be quite overwhelming - it' has its complications! Hopefully you can find answers to your questions. Once I started researching on Phoenix Rising, I became more educated and less fearful as to what I was experiencing. Hopefully you will find the forums as valuable as I have. :)
  4. kinshealth

    kinshealth

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    Thanks for the responses :) They diagnosed me by checking my blood pressure at laying down, sitting and standing up. Now from my research I've read that POTS is usually adrenal fatigue. I know conventional docs do not recognize this diagnosis but the alternative medicine community does.
    What can be done for POTS???

    Charlie1, Can you tell me about what you've been experiencing?

    Esther, yes, I'm trying to just relax and enjoy my family but I also don't want to discontinue finding answers to my health. I feel I need to get checked for Lyme and Pyroluria....I hope you're right that I will get "over it". It's hard becasue I feel like I can't handle any kind of stress. You're right though, that I ahven't been treating my adrenals and thyroid long...maybe 6 weeks so maybe after a bit longer I will be better:)
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    ahimsa likes this.
  6. Esther12

    Esther12 Senior Member

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    Good luck with it Kinshealth. POTS is not just an 'alternative' condition - it is recognised by mainstream medicine, although the quality of care offered seems very variable. I think this is a sensible starting place for you, as it does seem to relate to a number of your symptoms, and the people at ER thought it was a problem for you. If you do suffer from POTS you should definitely be receiving treatment for it.

    Be aware that with things like Lyme disease, there are some unreliable alternative tests and treatments which can do more harm than good. Unfortunately there's a lot of dodgy health care stuff around, so it's best to be cautious with a lot of it.
    ahimsa likes this.
  7. kinshealth

    kinshealth

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    Esther12,
    I was saying adrenal fatigue is not recognized as a diagnosis by mainstream medicine. I know POTS is. From my research and talking with peope who have lyme they have found the western blot test to be the most accurate and it is alternative. I have had the worst time with mainstream medicine.
  8. Esther12

    Esther12 Senior Member

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    Me too! I'm certainly not pretending that mainstream medicine is something that can be relied upon, or something that will not mistreat patients. Unfortunately, a lot of alternative stuff is even worse. If you have a POTS diagnosis, then that could let you access worthwhile mainstream medicine, and that's probably better than looking at alternative stuff.

    Sorry for misunderstanding about POTS/adrenal fatigue.

    It's been a while since I looked in to this, but I think that western blot tests for Lyme are still mainstream, but that some alternative practitioners treat patients whose test results come back as only partially positive, and that this can lead to false diagnoses. The trouble is that it seems that no testing is 100% reliable for Lyme, so there is legitimate room for debate - this can leave room for alternative practitioners to massively over diagnose and sell inappropriate treatments, and mean that 'mainstream' doctors can miss diagnoses and dismiss patient's symptoms. Personally, I would only look in to Lyme testing as a last resort, or if you had good reason to think that this was an issue (tick, bulls eye rash, etc) as it is so confusing and risky.

    Best of luck.
  9. charlie1

    charlie1

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    Hi Kinshealth,
    you asked me about what I"m experiencing and I'll TRY to keep it brief:
    Last spring I started tiring quicker than what was normal for me.By late June my chronically low blood pressure was falling further and I was now collapsing, literally with very little exertion. I began seeing a functional medicine doctor who diagnosed through muscle testing ( I'm not a big fan) that I had adrenal and thyroid issues and prescribed for me DHEA, Armour thyroid and Cortef (hydrocortisone) as well as a zillion other nutritional supplements

    Despite seeing this new doctor, my symptoms continued with new ones beginning. I was COLD, had a hoarse voice, mood swings, itchy skin, insomnia, nausea, less appetite, zero energy. But worst of all was HUGE cognitive impairment (like I was drunk) and major body weakness (couldn't walk proper, dragged my legs while bent to 45 degree angle) that would occur with my 'episodes' and often led to a 'collapse' if I didn't get to floor or couch in time.

    I stopped seeing the new doctor and his supplements in September because there was no improvement and I had lost over 10 lbs. My collapsing had become a common occurrence which now included palpitations, shortness of breath and chest pain. I was hospitalized for 3 days after being ambulanced to the emergency department. Hospital tests (including a cardio workup) were all normal. Because I was now having slurred speech with the cognitive impairment, my GP referred me to an endocrinologist who did a ACTH stim test which proved I did not have Addisons Disease which was being suspected by now. He prescribed FLORINEF for my low blood pressure and asked that I fax him daily recordings of Poor Mans Tilt Testing results which showed that I have an increase of > 30bpm within 1 min of standing still.
    My symptoms intensified and I was then admitted to a teaching hospital for one week on both the general neurological ward and the Epilepsy Unit where through MRI and 24/7 continual EEG ruled things such as MSA, Seizures, Parkinsons and MS were ruled out.
    Up until late November, I was able to get out of the house every 3rd if I did VERY little the previous days. But since early December, I am now mostly couch/bed bound due to intense POTS-like symptoms and post exertional fatigue and have only been out of the house twice for a short time period.
    Hope all that helps somehow.

    btw, I am scheduled for tilt table, valsalva and sweat testing at a dysautonomia clinic in 2 wks. Like you, I'm hoping for a firm diagnosis so that (hopefully), treatment can begin.

    When I read PR, I rarely see anyone who's pulse only reaches mid 80's when doing PMTTT yet b/c my pulse is usually in 50's - 60's starting off, it does reach >30bpm which still qualifies for a POTS diagnosis. Anyone else both bradycardic yet has POTS?
  10. Sea

    Sea Senior Member

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    My heart rate is generally in the low 50's at rest and jumps anywhere from 85 - 150 when standing.
  11. Sea

    Sea Senior Member

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    Welcome to the forum kinshealth, I hope you find some answers soon
  12. xchocoholic

    xchocoholic Senior Member

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    Hi kinshealth,

    I could've missed it but I didn't see you mention changing your lifestyle to exclude possible food intolerances and all toxic chemicals. Dr. Wahls TED video expains why foods and toxic chemicals can cause health problems. The Paleo and/or Wahls diet is gaining popularity because it excludes foods that aren't bioavailable.

    From what I'm seeing some people just need to avoid a few foods, gluten, dairy, corn and soy are the most common food intolerances, but others will need to stick with foods that are bioavailable in order to get the most nutrients.

    FWIW, If making these changes doesn't help you soon enough, I'd look for an integrative / functional doctor (tradtional MD + Holistic) who knows how to interpret the variety of tests available to both traditional and holistic practitioners. These include stool tests, saliva, nutritional panels, etc etc. I found mine by asking for doctor referrals from my local Health food store.

    hth ... x
  13. August59

    August59 Daughters High School Graduation

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    Since you have only had this since June you should be getting as much rest as you possibly need. No sure if you live close to any of the more respected doctors in the field, but I would check on that for sure. Be sure if you find someone on a list to comeback to the forum and let us know as there are some goods that are not on a list yet and some that started out good, but they end up using you for a lab rat and don't treat you at all.

    You need more lab work for sure because if you thyroid and cortisol are off then you probably have some others such as DHEA and sex hormones. Just get as much rest as you can cause I feel like that was one of my biggest mistakes I made was to keep on pushing it to the max till I could not get out of the bed, which took about 3 years. When I went down though I have not had ten good days in 8 years. I believe the rule of thumb is the first 5 years are your most critical as far as higher chances on a worthy recovery. I don't know about that though as with work at first and young kids after I quit work I never was able to rest much, but to go with that my sleep pattern did a complete flip flop and I wanted to stay up at night and sleep at day.

    You have come to the right place as I think you will find more disease knowledge on this forum than you wil find in any doctors office, but we are not doctors and encourage you if you see something on here that really hits home with the way you feel to please take it to your doctor. This also another way to find out what kind of doctor you have as I have had get in front of them so they couldn't leave the room till they heard what I had to say, I've called them pour excuses for doctors and etc....

    Good Luck
  14. taniaaust1

    taniaaust1 Senior Member

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    I too are going to tell you to get some treatment for your POTS.. "most" (but not all) of the symptoms you've mentioned could be being caused by the POTS. Anyone who has POTS should go and see a dr who specialises in this for treatment. Most POTS people can be helped some.

    wow... you've the first Ive ever heard about getting a diagnoses for POTS in the ER. Thou it is NOT an alternative field thing.. most doctors dont have knowledge at all on POTS. Seems you've got lucky.. thou I realised I had POTS, it then took me 5 years or so to find a doctor who knew about the disease and could start treating it. I have collapses from it (and seizure like incidences too) and have been unconcsious for up to 5mins at a time due to it (according to another, I myself had no idea how long I was unconscious for).

    There is also different types of POTS.. from what you said you may have hyperadrenalic kind which also causes higher adrenaline, see if you can get your adrenaline and noradrenaline levels tested to see if yours is abnormally high. Im on Clonidine for this kind of POTS along with taking Florinef due to also having low blood volume POTS. I also wear medical compression stockings for my POTS and have a lot of salt and fluid. These are all things it may turn out you may need.

    So do I. Take care that you are on the correct supplements for this.. Im finally getting improvement again since I've gone to a specialist in this and found out my previous specialists treatment of it wasnt correct (you shouldnt be on jsut the normal folate for this but need other form, I'd also been put on the wrong form of B12 for it etc). With treating this correctly I now are getting a bit more energy and also are becoming far more tollerant to heat. There is an excellent MTHFR website online which can help you to know if your current doctors have you on the right things for it or not.

    My sometimes out of normal range cortisol is currently being treated with Ashwagandha extract by a specialist dr who is also a little into natural therapies as well. (i previously was on hydrocortisone but that didnt help much)
    ahimsa likes this.

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