The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Does anyone here have Pulmonary Hypertension by any chance?

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by rosie26, Mar 1, 2016.

  1. rosie26

    rosie26 Senior Member

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    I have lots to read up and check out! And I would love to come to your place and thanks for the invite :D.
     
  2. rosie26

    rosie26 Senior Member

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    I get a strange stuffiness in my nose when I lie down on my side. Interesting about tyramine.

    Ok, thanks for that.
     
  3. Gingergrrl

    Gingergrrl Senior Member

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    Sorry to butt into your conversation LOL but in case this is helpful for Rosie- when I have a histamine reaction, it drops my BP and does not raise it. Skipping food completely actually raises my BP.

    Rosie, I also wanted to update you that after seeing the pulmonologist and having a good quality Echo, I definitely do not have PAH, but they found some other serious stuff that requires further investigation and treatment. Am in limbo right now but hoping to get the process moving soon.

    Good luck to you as always :hug:
     
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  4. SGR

    SGR

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    @rosie26 one amendment, then I will leave you to your research. My BP did increase in response to the Botox, 152 over something, I then went on to lose my vision in response to sound.

    @Gingergrrl thank you for chiming in, this is all so new to me, it's best if someone with more experience helps guide the conversation. I'm sorry that you have so much experience! Best of luck with your next steps.
     
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  5. Gingergrrl

    Gingergrrl Senior Member

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    @SGR I really do not have more experience and can't guide the conversation and didn't mean to give that impression. Every day I am learning something new from PR and feel like I am still in the dark ages with my level of understanding! I have never had hypertension or vision loss or some of the things that you describe and they sound very scary! Hoping all of us figure out what is really going on in our individual cases soon. Thank you for the good wishes.
     
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  6. rosie26

    rosie26 Senior Member

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    Please butt in when you want to. :D I have to go through this whole thread and take notes, appreciate very much all the bits of info.

    I'm pleased to hear they ruled out PAH and I hope the other serious stuff can be treated eventually. I think I lost the thread you were talking on about it, so thanks for updating briefly here.

    Good luck too. Onwards we go and hopefully some answers. :hug:
     
  7. rosie26

    rosie26 Senior Member

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    Thanks @SGR and for chiming in with all your info. I will go through everything and make some notes. :hug:
     
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  8. Really

    Really

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    Hey I will be following this thread. I'm having a bunch of different issues in areas in my body, neuro issues, breathing issues bowel issues. Some kind of vertigo head problem pulsating that is made worse by using computers and browsing the internet so I can barely be on here really but I need to find answers. for awhile i procrastanted since i dont like to read about symptoms to much on the internet since it can be scary but Im having extreme breathing problems a sensation of not being able to inhale in and any type of movement from sitting down to sitting up, sitting in different positions, bending over, laying down, walking makes my breathing worse, i cant shower or brush my teeth, even walking very slow to use the bathroom in my house is an issue. when im out of breathe like that it still feels like i cant inhale in properly and i have to force burps its really weird and scary. i dont know what this is, for awhile i was starting to believe i might have a hiatus hernia since people with those sometimes say it feels like their heart chest lungsbut its actually the hiatus hernia and since im having bowel problems too but i dont know anymore. my breathing always feels really shallow. i really need to find answers it was in the past couple months that my breathing got even worse where even the smallest amount of movement affects it. but in december i had a echo done which was before it was made worse by tiny movements, i mean atleast i could shower and walk around my house at the time, but they they said it was normal. its really hard to describe some of the symptoms im having they just seem so medically vague im not able to complete yawns sneezes and i cant laugh either somehow these seem related to my breathing issues, i can chuckle but if i find something funny i have to try to stop from laughing as it feels like im choking and theres some kind of pressure. the neuro symptoms im having are another story. lately some symptoms seem worse than usual too like pain everywhere, flinching and twitching sensations, i wonder if forcing burps thousands of times per day is doing any damage. i noticed the past 2 times after i had a bowel movement my breathing seemed alot worse especially the last time, the other day was pretty close to calling an ambulance where for awhile after it was really extreme then went to how it usually is, even the day after that it seemed worse than it usually when its like that it feels like some kind of nerve issue but im just guessing, where im sitting there and i cant inhale in or catch my breathe. its like this all day but can be more extreme than other times. sometimes it feels like food makes me worse to but not always. these problems started after i took a class of drugs called fluquininolones. if i move even a small amount during the day i will have chest pain after for the rest of the day simliar to what gingrgirl has mentioned. for along time time now ive been asking my self if money was no option and i could do any kind of treatment or test or anything i just havent been able to come up with a good answer on what to do. rosie you mentioned some kind of testing in the us, do you have any more information on this? i didnt want this post to be this long
     
  9. Gingergrrl

    Gingergrrl Senior Member

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    @Really I'd love to respond but your post is hard to follow (and normally I am okay with this!) but can you break it into paragraphs? That would be awesome b/c I'd love to ask you some questions re: your breathing and fluoroquinolones, etc.
     
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  10. daisybell

    daisybell Senior Member

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    @Really have you been tested for something called 'paradoxical vocal fold movements'? It sounds like you need to have that ruled out. ENT would test you for this, possibly in a combined clinic with speech language therapist/voice therapists.. It's treatable. Usually related to GERD.
     
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  11. Really

    Really

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    Hey sorry ill fix the paragraphs and thanks for the replys. I actually just got done reading gingergrls thread about her condition and found it interesting I need to look into those tests too in there gngrgirl you mentioned you cant blow off hot food which i cant do either.

    Hey I will be following this thread. I'm having a bunch of different issues in areas in my body, neuro issues, breathing issues bowel issues. Some kind of vertigo head problem pulsating that is made worse by using computers and browsing the internet so I can barely be on here really but I need to find answers. for awhile i procrastanted since i dont like to read about symptoms to much on the internet since it can be scary

    Im having extreme breathing problems a sensation of not being able to inhale in and any type of movement from sitting down to sitting up, sitting in different positions, bending over, laying down, walking makes my breathing worse, i cant shower or brush my teeth, even walking very slow to use the bathroom in my house is an issue.

    when im out of breathe like that it still feels like i cant inhale in properly and i have to force burps its really weird and scary. i dont know what this is, for awhile i was starting to believe i might have a hiatus hernia since people with those sometimes say it feels like their heart chest lungsbut its actually the hiatus hernia and since im having bowel problems too but i dont know anymore. my breathing always feels really shallow.

    i really need to find answers it was in the past couple months that my breathing got even worse where even the smallest amount of movement affects it. but in december i had a echo done which was before it was made worse by tiny movements, i mean atleast i could shower and walk around my house at the time, but they they said it was normal.

    its really hard to describe some of the symptoms im having they just seem so medically vague im not able to complete yawns sneezes and i cant laugh either somehow these seem related to my breathing issues, i can chuckle but if i find something funny i have to try to stop from laughing as it feels like im choking and theres some kind of pressure. the neuro symptoms im having are another story. lately some symptoms seem worse than usual too like pain everywhere, flinching and twitching sensations, i wonder if forcing burps thousands of times per day is doing any damage. something new i seem to have a slight cough lately too

    i noticed the past 2 times after i had a bowel movement my breathing seemed alot worse especially the last time, the other day was pretty close to calling an ambulance where for awhile after it was really extreme then went to how it usually is, even the day after that it seemed worse than it usually when its like that it feels like some kind of nerve issue but im just guessing, where im sitting there and i cant inhale in or catch my breathe. its like this all day but can be more extreme than other times. sometimes it feels like food makes me worse to but not always. these problems started after i took a class of drugs called fluquininolones. if i move even a small amount during the day i will have chest pain after for the rest of the day simliar to what gingrgirl has mentioned.

    for along time time now ive been asking my self if money was no option and i could do any kind of treatment or test or anything i just havent been able to come up with a good answer on what to do. rosie you mentioned some kind of testing in the us, do you have any more information on this? i didnt want this post to be this long
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    Thanks for putting it into paragraphs and want to help if I can but there are many different potential causes of dyspnea as I am learning the last few years. I struggle with things like blowing out birthday candles or hot food, etc, b/c I cannot inhale a full breath so doing this makes me very out of breath.

    I do not have any issues with using the computer (desk top) but am not strong enough to physically hold a lap top or iPad type device.

    I am okay lying flat or seated and my breathing issues are when I am standing, walking, talking for too long, singing even a few lines of a song, or the worst is tying to inhale/exhale several consecutive breaths like when the doctor listens to your lungs with a stethoscope (and also had to do this on my recent TTT and by the end I thought I would pass out although I didn't.)

    I don't have to force burps and don't have bowel problems but my breathing is very shallow most of the time and all my lung tests show a restriction. Have you had any spirometry or PFT testing to show if you have an obstruction or restriction vs. normal breathing capacity?

    I had an Echo in Dec that showed borderline high Peak Arterial Pressure which was why I was concerned about potential PAH but I did a second Echo in March (a few weeks ago) on a much better quality machine and my lung pressures were all normal and they ruled out pulmonary hypertension in my case. I can only shower using a shower chair but this has been for several years (even when I was still able to walk.)

    This part is a little different than my experience and I can yawn and sneeze without any problems and don't have pain everywhere or the twitching sensations. Have you seen a pulmonologist or neurologist for any of this? Sorry if you explained and I missed this part.

    Can you say more about how this started after taking an FQ antibiotic? Which one did you take and how long ago? I took Levaquin in 2010 and this was literally ground zero of when my health was destroyed (with several other triggers to follow in 2012 and 2013.) I had a systemic neurotoxic reaction and was hospitalized for it and it also nearly tore my right triceps tendon (which was in perfect health prior to the Levaquin.) I had chest pain at that time and felt poisoned overall. It affected almost every system of my body. My PFT tests several months after the Levaquin showed a lung restriction but unfortunately, I had never attempted a test prior to the Levaquin and have no baseline to compare it to.

    Do you live in the US or another country? This makes a big difference in the feedback I would be able to provide.
     
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  13. rosie26

    rosie26 Senior Member

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    This is probably caused by the pushing down we do during a bowel motion. We are doing something called the "Valsalva Manoeuvre"
    https://en.wikipedia.org/wiki/Valsalva_maneuver
    It's the act of forcing an exhale through a closed mouth and the pushing down at the same time. That will probably be why you feel even more unwell. You need a bowel motion that passes easily without too much strain while your going through all this.

    I still have to read your post more carefully. I am not in the US and not sure what tests you are talking about. I will try and look back over my posts.

    Welcome @Really and I am sorry you are going through all this.
     
  14. Really

    Really

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    Im having an issue with using the quotes so ill answer this way for now. talking bothers me too and whenever a doctor asks to do the inhale test i tell them i cant do it since i cant inhale properly and they tell me to try too but it doesnt really work.

    I havent had any spirometry or PFT tests yet, one of the doctors i saw mentioned that if i have an issue blowing that i might not be able to do a PFT test i dont know how true that is or not.

    i havent seen a pulmonoglist or neuroligist yet either since i have to wait for referalls and usually would only get referred to one specialist at a time. i mostly wanted my post to be about my breathing problems but its hard not to mention other things when there is alot of symptoms going on. i would really like to fix my breathing chest problems but the symptoms with my head and vertigo are pretty extreme too. the only doctors ive really seen so far have been internists.

    i took a fluquionoline eye drop 6 months ago. the crazy thing is i actually heard about these drugs maybe 5 years ago or so and i saw that there were people damaged by them. i had a eye infection type thing and they prescribed this drop, when i saw what it was i wasnt going to take it since i remembered that they werent safe drugs, but then i told myself since its a drop and not a pill and if i only take a small amount it wont be able to do damage, biggest mistake ever. do you attribute all the problems you are having now to the fluqionlones you took more than 5 years ago or to the other issues you had after too? this is really not good news for me since 5 years is awhile

    i live in canada with the free health care system i have to wait around for doctors and being relatively young most doctors dont take me that seriously, and the ones that do dont really know what to do besides just the standard tests

    i would be open to going out of the country for tests and treatment if possible but in my current condition i wouldnt really be able to travel, i would still like to know what options there are for that

    thanks
     
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  15. Gingergrrl

    Gingergrrl Senior Member

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    @Really I will reply to your questions tomorrow and please remind me if I forget! @rosie26 I hope you are doing well also.
     
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  16. Really

    Really

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    Rosie i believe you mentioned in this thread something about immune testing in the states i will have to find where

    how can i be so sick yet tests be normal? different things jerk, my head constantly moves all the time by its self and sways, i cant really do even some of the tests like a mri of the brain since you have to lay flat and be mostly still which i cant do, even the barium test that the doctor wanted me to do doesnt seem that safe either since the barium you have to take, i have no appetite at all even if i go the entire day with out eating instead of getting hungry my bowels just make these loud rumbling noises, different things in my body feel swollen, my left nostril often is runny, its like pretty often i get new symptoms ontop of the symptoms i already have.

    lately ive had lots of mucus that i always have to suck up and it seems kinda thick. recently i was having an issue sucking it up and i was gagging on it. made 3 or 4 really loud gagging noises. was pretty scary i had to sit on the floor after just to get over what happened.

    yesterday evening i couldnt get the burps out for a couple hours so it felt like there was the gas in my chest which seemed to make everything worse. it felt like i was having a stroke or something super disoriented and my head felt like it was in a different place physically when it was moving some kind of nerve sensation cant really explain it.

    im literally completely disabled due to the breathing and what not, but to make matters even worse i cant even be semi comfortable at home with how my breathing is, and i cant sit there and watch a movie or do anything. its like im sensitiive to the visual stimulation in some way. it feels like computer screens do more damage to me. i used to drink 3 literes of water a day now i can barely drink a liter.

    for awhile i noticed that it seemed like i was made worse by drinking water with flouride ions in it even if it was only 0.1 so a small amount, and using normal toothpaste with flouride, so i decided to drink water only with out flouride, and use a toothpaste with out flouride when i would brush which is pretty rarely these days, and i didnt have a real shower for longer than 40 days but thats due to the breathing issues.

    i tried to shower a few days ago and since then i swear ive been worse is it possible the flouride from the water can get into the body in the shower? how is this even possible? what is any of this? its all a mystery to me. daisybell i will look into what you said too. it really feels like i could die sometimes. i have to wonder if this will ever get better
     
  17. Gingergrrl

    Gingergrrl Senior Member

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    When you say the "inhale test" what do you mean? Do you mean when they listen with a stethoscope or spirometry testing or something else?

    It sounds like you will not be able to complete a PFT test like me from the issues that you describe? Was your difficulty with inhaling an acute issue or did it start slow and progress over time?

    I understand that it is hard not to mention other things. For me, my breathing is the core of my illness until the MCAS allergic reactions began. Do you get any allergic or anaphylactic reactions to food or medications?

    When you said that the FQ eye drop was the biggest mistake ever, what actually happened to you? It is associated with retinal detachment and other eye damage. I have never used an FQ eye drop but took Levaquin (pill form) for a throat infection in 2010.

    I attribute the neurotoxic reaction that I had to Levaquin as the true start of my illness but I believe I would have lived a normal life with a 90% recovery if I had not gotten severe mono/EBV two years later following a minor surgery, then a second unknown virus, and severe mold exposure. So it is very hard to separate all of the immune system triggers in my case.

    I really do not know very much about the Canadian system so cannot give direct advise. Lately I have had positive experiences with some younger doctors b/c they were more up to date on current issues and medications vs. some of the older doctors that I had seen. But I don't want to overgeneralize of course.

    You would have to narrow it down what you were traveling for and what purpose. I have traveled for medical tests and treatments all within my own state by car and am no longer well enough to fly. I don't drive anymore either and am lucky that my husband is able to drive me or none of this could have happened.

    I think it depends which tests you take. I have failed four PFT's and all of my breathing tests are abnormal. My two TTT's were abnormal, my MCAS tests were abnormal, and now I have these two rare auto-antibodies. But a standard blood panel is normal for me except thyroid shows Hashimoto's.

    What are the positions in which you can and cannot breathe? I can breathe supine (lying flat) or seated but I cannot breathe standing or walking. So I am fine watching a movie or show on TV and I now use a motorized wheelchair inside of the home to get from room to room. It has been a game-changer for me and I wonder if this could help you? When I forced myself to walk inside my apt, even a few feet, I would get burning lung pain, angina, and be gasping for air and with the motorized wheelchair, I no longer have to experience this. It is not a cure and is just masking the symptoms but for now, I will take it!

    FQ antibiotics are extra toxic b/c of the added fluoride so it may be why you are not tolerating things with fluoride in them. I suspect it also led to my thyroid damage but I cannot prove it.

    This could be due to POTS or OI. Do you use a shower chair or take a shower standing?

    Hope this helps.
     
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  18. Really

    Really

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  19. acer2000

    acer2000 Senior Member

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    IIRC PAH can also be a symptom of CIRS.
     
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  20. rosie26

    rosie26 Senior Member

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    What is CIRS @acer2000?

    Edit: CIRS = Chronic Inflammatory Response Syndrome.
     
    Last edited: Apr 12, 2016

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