Broken_Shell

Erika, While chest burning isn't a typical side effect of Zoloft, the SSRI's can really cause almost any type of reaction in someone depending on how sensitive their system is. The SSRI's are also hard medications to get used to too, so maybe you could talk to the doctor about starting at a lower dose. What other anti-depressants have you tried? Have you considered not taking the Zoloft for a couple of days to see if the burning goes away and then returns when you start the medication again? This is what I would do it I were you, and if you've only taken two pills, it is safe to stop for a few days and then start again. Keep us up to date. Sending hugs your way ~Broken_Shell

Jana, I will keep you and your mother in my prayers! I am so sorry to hear about both situations, and I hope that you can deal with everything one day at a time. Let us know what the amyloid biopsy shows. I had that done several years ago, so I can assure you that at least the actual biopsy isn't so bad - mine was taken out of my abdominal area and I was really nervous. It was uncomfortable and sore for about a week afterwards, but do-able. Keep your head up honey! ~ Broken_Shell

Hello and welcome! I am sorry that you are suffering so much, but I hope that you will find guidance and support on the forum. It sounds like getting a home blood pressure cuff would be a good idea for you. This may sound obvious, but with your symptoms, have you had your thyroid checked? Have you been on any medications other the beta blockers for your symptoms? Also, that's normal that your sodium blood level doesn't change because you increase the salt in your diet... that means your kidneys are working well, so give yourself a point there ~ Broken_Shell

What a sweetheart you are for starting this post. I have just recently made a comeback to posting and have noticed that some frequent post-ers are missing. My thoughts and prayers are with them that they are doing well and not so debilitated that they can't make it on-line. ~ Broken_Shell

Oh Maxine! I am so sorry. It is always so frustrating and depressing when a symptom is worsened by a silly accident or something that happened while you wre trying to live your "normal" life! If I were you I could contact the MD though... you've had an accident and you want to be sure that there is nothing acute or dangerous going on. YOU know your body the best, so trust your instincts! Sending support and hugs ! ~ Broken_Shell

Hi, I hope you can make it through... food poisining usually passes in 24 to 48 hours. I am glad you are trying to keep on top of hydration. The best way to keep things down is just little sips of fluids every few minutes. Don't hestitate to call the MD if your body can't hold up under the POTS and this illness. Sending hugs and well wishes Let us know how you're doing. ~ Broken_Shell

Well, I guess I missed the Cardizem on your list of meds... Hello Michelle! I was all happy when I thought the doctors had overlooked trying you on a CCB and that you might have a new option too. Sorry about that... Might it be worth giving the verapamil a try. Even though they are from the same class, the Diltiazem and Verapamil are different, just like each of the beta-blockers are unique. Wish I had more thoughts... Hi Michelle, You are such a doll. I owe youa long ovedue email. I did try the ditiazem cd (cardizem Cd) and still had wicked heart palps and rapid heart rate. My body just doesn't seem to like ccbs. I was ok on the betas but now they are contraindicated and it is upsetting to say the least. There must be a drug out that works on both lowering b/p and heart rate. Grrr. So frustrating especially when I get conflicting info from drs. I think that pharmicists know more! Hope you are doing ok. So sorry that I didn't get a chance to PM you back. You are so sweet to always come to my aid. Hugs, Rene

Hi Rene, Augh! I am SO sorry you are still struggling so much with this and it seems that no doctor feels comfortable enough to commit to help you. I am not a medical professional, so I have make the disclaimer, but has anyone ever talked to you about trying diltiazem or verapamil? They are a certain type of calcium channel blocker that can lower BP and HR, and if I remember correctly from my training, they are a choice drug for prinzmetal's vasospastic angina. Just a thought that might be worth mentioning to the doctors. Please keep us informed honey. I am praying for you! ~ Broken_Shell

Hi Erika, I hear you too, and I wish that I had an answer for you and for all of us! If it was a case of mind over matter, we would all be out conquering the world I always worry about other people thinking I am lazy or selfish too, but just remember that no one can pass judgement on anyone unless they have walked in their shoes and anyone who does judge is breaking a golden rule... The best thing you can do is try to be as prepared for everything as possible and make as few commitments as you can. I know it is hard and a frustrating way to waste your talents, but I think it is the best we can do. But rant and rave all you need while you're here on the forum though - we all understand and feel your pain. Believe that somehow, someway, if we all just pray for each other and fight for each day with all we've got, then we will make it through one day at a time... or more like 5 minutes at a time! Hang in there. I am sending you a hug. P.S. I laughed when I saw the suggestion to Google yourself... thanks for keeping humor in all of this, BellaMia! ~ Broken_Shell

Hello, I would like to send a letter to Oprah and Dr. Oz asking them to use their shows to help raise awareness about dysautonomia. I will let you know if I get any response. For the creators DINET, do I have permission to include a link to your site in my letter? Thank you! ~ Broken_Shell

Hi, My BP usually tends to run about 90/60. To me that seems normal for a 27 year old, small framed female. Some of my doctors think this BP is fine, and others feel that it is too low and contributing to my symptoms. What are other people's BPs, and at what level do you begin to feel symptomatic and like your BP is too low? I know that I just posted on ihatebananas topic about the dis-correlation between peripheral BP and blood flow distribution causing symptoms, but I would still appreciate some feedback just because so many of our doctors think that our peripheral BPs should make or break our symptoms. I do experience an increase in symptoms when my BP goes into the 80's/50's, but I don't know if I'd feel even better at something higher than 90/60. The thing is that when I look at my old medical records, my BP was never much higher than this and I didn't have any of the symptoms back then that I have now. Thank you! ~ Broken_Shell

Hi Bananas, How I wish I had an answer to your question! I wonder the same thing. What I think is that we have symptoms based more on inappropriate blood flow distribution, for example to our brains, GI tracts, etc. that is not reflected in peripheral BPs. However, the symptoms we experience can also be related to the incorrect mix of autonomic neurotransmitters and other aspects of the "checks and balances" systems in our bodies that don't work right, and these things can occur independent of our blood pressures. Broken_Shell

Hi Erik, I wish I had more helpful thoughts, but here are the few I have... I often see a slight increase in BP upon standing, and I have read and been told that this is in fact consistent with dysautonomia. The narrowing pulse pressure is usually a sign that you body is under orthostatic stress and fightin hard to keep cerebral perfussion adequate, so it is not necessarily a good thing. The set of values you gave were from 10 am and 5 pm, do you notice the same difference if you compare readings from the same time of day. Just a thought since autonomic BP regulation varies throughout the day. Do the new supplements seem to correlate with the change in readings? Maybe you could just try one new things at a time to see if it has an affect on your BP. One the other hand, maybe the supplements will help in the combo you are currently using and this is just a transition phase... one can always hope! ~ Broken_Shell

Hi, I am glad you have gotten some pain relief Well said about abnormal responses to normal problems! ~ Broken_Shell

Hi All, I can't believe how long it has been since I have posted on the forum. I am still in a bad flare with GI symptoms that just won't quit and bad bleeding problems coming from the hormone therapy that I am trying, but I wanted to stop by and say hello. You are all in my thoughts and prayers. I know we are all suffering with problems and questions, so I am going to try and make a little bit of a comeback to posting if my body will allow. Wish me luck! ~ Broken_Shell

Good luck! I hope you get some answers. I started down the mitochondrial road, but this doctor doesn't accept Medicare as insurance, so that put an quick end to continuing to consider the option. However, when I was exploring the option he was spoken very highly of. ~ Broken_Shell

Oh Jennifer! I am so sorry to hear this. I know it's hard to trust doctors even when it is for an acute, more "normal" problem, but it sounds like you need to get it checked out. I wish I could suggest a good doctor to see who would look at you as a whole person and treat you by considering all of your symptoms and conditions, but I can only offer hugs and best wishes. Please let us know what happens. ~ Michelle

I have this feeling too. I have it everyday, and it varies in intensity. I know that we have posted on it before if you want to search the archives for more responses. I call mine "proprioreceptive disorientation." I wish I knew what it was, but I often feel like the floor is moving like a slowly lulling ship or gliding, I feel like I am tipping, I feel like my body is sliding at different levels in my spine or my head is somehow "morphing"... I know it all sounds crazy! It waxes and wanes in me all day and is often one of my most debilitating symptoms. Someone else mentioned that it seems to be worse when associated with a bowel movement, and I have experienced this as well. I think that is must be somehow related with the dysautonomia - maybe it's related to neurological misfires or inadequate blood flow to the brain? If only we knew or had a way to decrease it!

Jump, I am so happy for you! I hope that you continue to have a good and productive relationship with this doctor. Can I ask what specialty these doctors practiced? ~ Broken_Shell

Hi, Here are a few things that have made the shower more "do-able" for me.... Use a shower chair Drink a lot of cold water while in the shower Leave the shower curtain and bathroom door open so that I can feel cold drafts while in the shower Do some washing outside the shower using a washcloth if I am having a day where I don't think I'll make it all the way through washing in the shower Some other things that help me make it through the day are doing most things at a low table while squatting down, keeping an ice pack or cold wash cloth with me at all times, and keeping a backpack in my living room by the couch with a bottle of water, medications, snacks, etc. - anything that I might need during the day and can easily grab if I am too symptomatic to get up off the couch. I hope this helps. ~ Broken_Shell

Hi All, I am still in the midst of a big flare. I keep on feeling like there is ice water around my heart and getting cold sweats in my chest, along with some chest pressure. I am getting cold sweats and clammy on my hands and feet which I understand, but has anyone ever experienced this type of sensation in their chest? Should I be worried about it or just try to ride it out as some type of autonomic craziness? Thank you. ~ Broken_Shell

Well Suzy, at least you made me smile! We must have been typing our "checking in" messages at the same time. You are in my prayers, and I am glad to hear that you are feeling at least a little bit better. It's a good sign that you were able to make it out to the doctor's appointment... I just cancelled my physical therapy for the day because I am just way too sick to leave the house. Hang in there though... I hope your battle gets easier everyday until things stabalize! Big hugs ~ Michelle

Hi All, Sorry I have still been MIA. I continue to be in an awfully rough spot... autonomic symptoms, bad GI symptoms, and the return of the severe bleeding problems that are not responding appropriately to the changes that have been made with my hormone therapy. It has been a while since I've been up to doing much on the computer - it's amazing how many new posts have gone up since I've last been here! I know that you are all fighting your own battles and I wanted to say hello and let you all know that you still have my support and prayers. Hugs, Michelle (Broken_Shell)

Can I ask what specific symtpoms it helps and what time of day you take it? Thank you.

Hi, Sorry that I have not been very active on the forum lately... things are not going very well. Just wondering if I can get some feedback and experience on this... Has anyone had any success (or failure) using any of the benzos (Valium, Klonopin, clonazepam, Ativan, etc.) to reduce nausea, decrease the frequency of bowel movements, and reduce intestinal cramping or the dizziness and other autnomic symptoms related to over-stimulation of the bowel? Thank you in advance. Hope everyone is hanging in there! ~ Broken_Shell