Katybug

Hi Lieze. I'm sorry this is another thing added to your plate. I know you really didn't need it right now. I don't have any great solutions but I am sending good energy your way and want you to know that I am thinking of you and your kids. I send well wishes and a big hug to you. Hang in there.... Katie

Yes. In fact, my GP sent me for sleep studies prior to figuring out the POTS dx. He was a fraid I might have narcolepsy. I don't have narcolepsy but I do have "hypersomnia". I fall alseep faster and am able/need to sleep more than what is normal. Shortly after getting that result, we got the POTS dx from the cardio. The docs attribute the hypersomnia to the POTS. I will also go through times when I can't fall asleep for hours and hours and then wake up on 2-4 hours later, but, then I need to do this multiple times through out the day because of the fatigue. My circadian rhythm is all kinds of messed up from this thing!

I think Hashimoto's (low thyroid) can be linked to dysautonomia and is believed to have a genetic link. My mother and older sister both have Hashimoto's, although neither of them are diagnose with any type of dysautonomia. (But my mother does show some suspicious symptoms.) I have not tested positive for it, but, neither did they until they were in their 40's. Something to look forward to!

I know my doc said recumbent bike so I could exercise in a sitting position as opposed to standing. I don't have the funds for the full bike so I purchased one that is just the pedals and you sit in a chair. He said that's just fine. He also encouraged me to keep walking my dog as often as possible. What he warned me not to do is exercise (in any form) until I end up in bed for several days because I over-did it. He said if exercise one day and end up bed-ridden from it for several days after that, it is worse for my conditioning than doing less exercise (either less intense or shorter duration) and building the intensity and duration over a long period of time.

I haven't seen that POTS, itself, can cause protein in urine. But, I have seen that some of the associated diseases/disorders can cause this. Also, keep in mind that it could be happening the other way around...the glomerulonephritis could be causing the dysautonomia. You may wnt to do a google search that cross-references the two items. I have found quite a bit of information that way regarding my own set of symptoms/diagnosis.

4yrs total and counting...4 yrs ago my symptoms started. It took 6 months and 18 doctors (and one trip to my verterinarian whose the one that figured it out) at that point to diagnose tick-borne illness. I had all the POTS symptoms then, too, and we are now seeing research papers linking tick-borne illness to POTS. I have never been symtpom free since then. Finally, a severe flare up in Fall 2010 sent me back to pursuing either additional diagnosis or additional treatment for the original dx. It took 7 months from then (4 repeat docs and 5 brand new docs) to get the POTS dx in Mar 2011. Now we are are starting to look at root cause including possible mast cell issues, so there maybe more dx to come.

Hi pulp! I get this but I don't know (other than POTS) what it is exactly and I don't know how to make it stop. I sweat like I've been in an aerobics class but I'm just laying down! And then I will get the "spins" and be very weak. I then usually get very chilled after the episode passes. I may have just one instance or I may have waves of it and sometimes it includes nausea/vomiting and sometimes not. I also will have to urinate a lot and urgently when it happens. These episodes sometimes wake me out of my sleep. I has been less frequent since being on the beta blocker but it still happens. It literally feels like someone flips the "autonomic dysfunction switch" to on and away I go!

I am not in Canada and I am in the middle of the evaluation process in the US for disability. I am using an attorney and he told me to keep a daily journal of my symptoms including what I can/can't do each day. He said it doesn't have to be super detailed, just 3-5 sentences about how the day went. He said if we have to go to an appeal hearing (which is where we are headed soon), that is where we will use the journal. I don't know how it works in Canada, but it may be worth it so soemone who is evaluating your case can get a true picture of what your life is like. Good luck.

Hi Lieze. I just had two thoughts: 1) Maybe in the new house you could set up the electronic air filters/cleaners in each room to help keep the air cleaner for you. I know they are a financial investment but I definitely can feel the difference between the room I have one in and the other rooms in my house. I just use it in the bedroom when the spring allergy season hits so I can sleep better but it really does seem to help. 2) Based on what you describe in your last post, have you ever been tested for Lyme/tick-borne illness? Many of the symptoms you describe are what I experienced during the early onset of my tick-borne illness in 2007. Lyme can cause a lot of symptoms that people don't usually hear about like really bad nightmares, along with the things you do hear about like cardiac issues, neuro issues, joint pain/swelling. May be worth the blood test if you haven't been tested before.

Sorry his migraines are so bad right now. They are NO fun! Florinef can cause/trigger migraines...I can take .1 mg but when we tried to go to .2 mg I had a migraine by the second day and it lasted for 5 days and was pretty severe. Did the increase in migraines correlate with his increase in Florinef? My neuro/POTS specialist gave me a drug called Maxalt MLT which you only take when you have an acute migraine (not a preventative). It has been immensely helpful as even serious pain meds were not relieving my worst headaches. Maybe his doc could let him try it if it doesn't conflict with other meds. Its non-narcotic which I really liked because I really don't like taking anything addictive. I also usually use ice packs on the back of my neck, but, every once in a while when these don't seem to be helping, I actually need a heating pad on my neck and shoulders to help relax the muscles. It sounds couter-intuitive but it helps every once in a while. Hope he gets some relief soon. I have seen your other posts and was so hopeful for him as it seemed he was doing well with school.

I don't have any good suggestions but I'm just so sorry you are having to go through this. I can't imagine my home not being a place of comfort. I'm sure its hard.

I have had similar tests for my POTS as Sue1234. An ELISA can diagnose Lyme depending on the result, even if a western blot is negative. There is a true "positive" result and then there is a result called "equivocal" which usually requires additional "proof". Maybe you can go over the result again with yous doc. A good resource for Lyme info is www.ilads.org . I was also tested for several Lyme co-infections (which are other tick-borne illnesses known to be carried by ticks infected with Lyme, i.e. Babesia, Bartonella.) My Lyme specialist also had my C4a levels tested as this is an inflammatory marker in your immune system known to be higher in people with chronic Lyme disease and a small handful of other autoimmune/inflammatory diseases. I did have Babesia which has to be treated with different meds than Lyme and my C4a was off the charts.

Hi. My cardio and my neuro (POTS specialist) have both encouraged the same type of exercise...recumbent bike. In fact, I just spoke to the neuro about it specifically today. He suggested the protocol from a study in Boston starting at 10 min on the bike 6 days a week. Each week I am to increase the time by 5 min up to a total of 45 min. (There is another exercise protocol out there from a study in TX but he said that should really be monitored by a cardiologist.) He said only increase the time from week to week if I am able to tolerate what I am currently doing without ending up in bed afterward. He also said that I should keep walking my dog as often and for as long as I can, which at this point is 10-20 min 5-6 times a week (I usually have one or two days when I can't do it at all.) Maybe your doctor can suggest something that would be safe that is specific to your health status.

Hi Lieze. It sounds like it could be mold. When you had the house cleaned did it include the furniture and carpets? Did you wash all the linens, clothes, curtains when they did it so everything would be decontaminated? Also, has the HVAC duct work been cleaned? That can hold all kinds of dust/mold spores/toxic stuff? I really hope things get better for you in the new house!!

Hi Naomi. I have constant tinitus/ringing that never stops and is sometimes really loud and I also regularly experience my ear drum "fluttering" which I can hear and feel. It's kind of like when you get an eye twitch except its in my ear drum. I also get a lot of stuffiness in my ears but it is not constant. It seems to ebb and flow with the rest of my POTS symptoms, worse on the bad days, better on the good. My hearing has also become annoyingly acute due to the dysautonomia. I hear things way before anyone else can (but they eventually hear them once the noise gets closer/louder. That's how I know I'm not hallucinating. ) The ENTs couldn't find anthing wrong and in fact said that my hearing test was the best they had ever seen (No surprise since I can actually hear dog whistles now. This is not a gift a have always had...just since POTS arrived. ) They somehow ruled out Meniere's but I'm not sure how. I hope you are able to find an answer soon. The ear stuff is pretty annoying...I often can't be in the room with my parents when they watch TV because they both have mild hearing loss from aging and it is so loud to me that it actually can make my other symptoms (nausea, dizzy, hot flashes) flare up.

Hi Sandy. Sorry you had to leave your church. You expressed so much of this particular symptom so well. Thanks for your post.

Hey Lieze! I'm sorry you aren't feeling good about yourself right now. I totally get it. I actually had my hair cut really short in the spring so it would actually look like something with no effort at all. I change the color when I get bored with it (that's something I can sit in a chair and let someone else do ). I recently haven't been attempting make-up cause if I shower, dress, and do hair, make-up usually pushes me right over the POTS edge. But yesterday, my mom said she would drive me to Target in the afternoon, so I had all day to get to a point where I could put on make-up. OMG....I forgot that I could be pretty! Without make-up I am so pale and drawn looking these days and my skin is just not a healthy color anymore. I think I will try to put on make-up at least once a week now just to remind myself of the possibilities (I put it on while lying on the couch with a hand held mirror). I also have a deal with myself (cause I'm on a really tight budget these days) that I can buy myself something pretty each month under $50. It allows me to be kind to myself. I have definitely had to come to terms with my own vanity and it hasn't been pretty. Hang in there and thanks for this post. This is another topic that isn't easy to talk about publicly.

Hi Lieze. Yes and that's, like, only 1/3 - 1/2 of the picture. I have an appt on Thursday with my POTS specialist during which we are supposed to discuss what further testing we want to do tolook for root cause things to treat. Looking through my labs from previous docs is what made me notice the pattern in the blood work and then start research. That opened the Pandora's Box on all the past stuff. It was always weird stuff that either was not explained/treated well or not explained at all. And I never even thought to bring it up to this doc, but, now it looks like it could be part of the picture. This doc seems very reserved but is surprisingly open-minded when you get to know him so I feel like he will be attentive. I'm just trying to get a picture if this is the kind of stuff that the peeps with MCAD experience day to day (you know how generic the symptom lists are in online resources.)

I have a hiatal hernia but the doc says it is not yet bad enough to operate on it. I have always had reflux (even before the hernia) and don't really feel any better or worse from it. My biggest concern is that all the voiting from the POTS may make the hernia worse. Chiropractic (which I use) won't fix it. Even if the chiro can manipulate the stomach back down to where it belongs, the issue would still be the loosening and/or tearing of the diaphragm caused by the herniation. It would still be there and it would reherniate. My mom also had one for years. Just last winter she started having a lot of pain (more than usual) and she also developed asthma. Seperate issues, right? Wrong! The hernia had become so large it was causing several more serious issues: 1) The portion of her stomach herniated above the diaphragm was pushing on her aorta causing chest pain no one had previously explained other than saying it was from the asthma, and, 2) The asthma was actually a result of the severe acid reflux being caused by the hernia, particularly at night when the stomach acid could come up the esophagus and allow small amounts to seep into the trachea, irritate the lungs, and cause asthma. They did laproscopic surgery to fix it and placed a piece of mesh around the hole in the diaphragm to reinforce the compromised area. She is doing great! The surgeon said it could take up to a year for the asthma to completely resolve since the lung tissue had ben irritated. Surgery was in April and the asthma is almost resolved. Her chest pain is gone. She still has some reflux but not nearly as bad as it was.

Hi Peregrine. As far as I know, the tachycardia caused by POTS is an arrythmia (I think any abnormal heart rhythm is considered an arrythmia.) I'm pretty sure that they can still do a tilt table test and verify if you have POTS even if there are other heart arrythmias going on (assuming it would not be unsafe to do the test) as the POTS diagnosis is made based on the change in the number of beats from a supine to upright position. It is not specific to other irregularities in the beats. If there is a chance that you have some form of dysautonomia, including POTS, it will be well worth finding a doctor (a cardio or a neuro) that truly specializes in dysautonomia. Good luck and feel better!

I experience this. It seems to be related to my migraines. I don't notice it unless I am getting or have a migraine. It lasts usually up to 10 seconds maybe before everything seems to normalize in my vision. I have lots of visual issues related to my headaches.

Hi Folks! I just noticed while going through several years of labs that I have consistently had a slightly raised MCH (mean corpuscular hemoglobin) and low globulin readings (over 4 yrs.). The readings are so close to the "normal range" that I doubt a doctor would have been concerned when just looking at one blood test. It took me 4 yrs. to notice that there was this pattern in my bloodwork. My research says these results can possibly be related to mast cell disorders. Here are other things in my history that may or may not be things related to mast cell issues: - Stomach issues developed when I was 5 – reflux, motility issues, vomiting, continued on and off for whole life - Now have hiatal hernia - Now have severe reflux, vomiting, diarrhea (vomiting and diarrhea are always extremely acidic), abdominal cramping - Drug allergies since childhood to several antibiotics and motrin - Unable to use lotions on legs including some prescribed by docs or shaving cream or even soap to shave – itch and get significant folliculitis - Severe environmental allergies when young, still experience some level of this - Ended up having to stop allergy shots in high school as I ended up reacting with severe, full body hives about 2/3 of the way through the initial phase of increasing dosage, had to take hydroxyzine and prednisone for weeks to get rid of the hives - Had unknown viral infection my sophomore yr of high school during which I got red bumps on my fingers. Also had a rash on body during the initial illness. Docs (PCP and dermatologist) were unable to clearly ID what the bumps or infection were. Have continued to get these bumps any time I get a viral infection. (Sometimes will get bumps without any other symptoms of any kind of infection.) - Often get hives when I am feeling particularly unwell usually in small of back or on face/neck. Also get rash across my buttocks and thighs when I have hives in small of back. - Often seem to have acne breakouts on my face when I am not feeling well. Its like my skin gets toxic when I have really bad periods with my other POTS and GI symptoms. - Sometimes have what seems to be over-reactions to bug bites (and a bee sting 2 summers ago.) Welts get very big, swollen, painful and take many wks (8-12) to heal and go away. Other times I won’t reacte to bite at all or welt will heal within an hr. Very strange. - Bad reactions to Lexapro and Paxil – brought on acute POTS symptoms, weird reactions to other meds – need huge amts of novacaine to numb mouth, gas dentist gives to relax patient doesn’t work on me at all, morphine didn’t help pain at all or even affect me during my kidney stone issues – had to be given Delauded and Phenegran, benadryl, promethazine, belladonna all seem to help reduce all of my symptoms.Verapimil also gave me some overall relief in addition to my migraines being treated. - Pattern of high MCH and low Globulin on blood tests - Unexplained chronic joint and muscle pain (possibly aftermath of the tick-borne illness) Are these the types of symptoms those of you with diagnosed mast cell issues have experienced through the years? Do you think I should pursue this with my docs? Any insight into the daily symptoms is appreciated.

Hi! Welcome to the Forum and sorry you need to be here. I am not specifically familiar with proamitine but different meds have different mechanisms so your doc may think this will work differently for you. The Florinef should have forced your BP up by increasing your blood volume. I was treated once with Verapimil (a BP lowering med, calcium channel blocker) for my migraines even though I had low BP. My doc monitored my BP and it was not affected at all but it helped the headaches. Maybe your doc is hoping for this kind of situation. That being said, I agree with Lieze, you should call your doc and tell him your current BP and inquire about why he wants you to use this particular med and what he hopes to accomplish with it. As a new POTSie, I actually encourage you to ask your docs as many questions as possible as this is a complicated disorder to treat and just when you think you get it, you'll have more questions. Glad you found the forum. I have been diagnosed since Feb. of this year but have been searching for a diagnosis for 4 yrs. This forum has been a great resource and also an inexplicable support on the bad days. Katie

Thanks everybody! I really appreciate everyone letting me know I'm not alone. I was so sad yesterday about getting snippy with my mom because she is trying so hard to take good care of me (and I'm 36 and should be taking care of her by now and was before stupid POTS ). But, really, everyone on this site really helps me feel better about myself these days. Just knowing I am not alone... And YES, YES, YES to everything everyone said. Yes to oxygen deprivation and glucose deprivation of the brain! It really feels like I'm having both when these ugly little moments happen. I am not officially hypoglycemic but I always run borderline when tested through the years so the docs have said to assume I am and act accordingly (I don't think they meant yell at your mom when they said this ). I have been crabbier this week than usual and I haven't been able to eat properly at all (today I didn't even attempt food until 3pm because of the GI issues.) I didn't think about the sugar issues also contributing this week. You guys are great! Thanks again! P.S. Mom, in usual Mom-fashion, didn't even remember it happened when I apologized again when she got home from work. She's pretty great, too!

Hi everyone. I am finding that when I am feeling particularly "POTSy", it takes very little to make me short with people. I'm not totally off the map, I just don't really have a filter and I get snappy pretty fast. It's like I can't control my tone and bluntness. For example, my mom called to check on me today and asked if I opened all the windows in the house. This has been a topic the last two days since I didn't open them because I was comfortable without them open. My response today (I was feeling shaky and have not been able to eat normally in three days due to POTS induced vomiting and diarrhea) was to snap back at her that I didn't understand why she cared if the windows were open when she isn't here and I'm comfortable. (It was not a nice tone.) It came out before I even knew what I was doing. I don't normally act like this and really find it embarrassing and it feels like a lack of control. I find that it only happens when I am feeling shaky, dizzy, brain foggy. Is this something that others experience with their POTS? I immediately feel bad and apologize when it happens as I recognize the change in behavior. I just can't seem to make it stop. It is so disturbing to me. I feel like my evil twin takes over for 10-20 seconds and blurts out whatever she feels like then she leaves me there to pick up the pieces. Any feedback is appreciate. I've had a particularly bad day emotionally and just need some support on this one.