Jump to content

kayjay

SUPPORTER
  • Posts

    1,114
  • Joined

  • Last visited

Everything posted by kayjay

  1. I absolutely had/have sleep problems because of my hyper pots. It wasn't uncommon for me to wake 10-20 times to urinate and often in a pool of sweat. Now that I am more stable I have learned some bad sleep habits (I mean my brain expects to be woken). I do have various sleep aids and take them occasionally but I just purchased a book on cognitive behavior therapy for sleep. I think it's called "say good night to insomnia". It's a six week program and I have to say it's really helping me. Last night I took a sleeping pill but I usually am able to sleep ok without them. It complicated but my physical sleep problems led to other sleep problems.
  2. I had another child but I was not diagnosed at the time. It wasn't a dilemma for that reason. I can encourage you perhaps by saying my second pregnancy was much easier. I had my first episodes of high blood pressure during my first pregnancy and none during my second. I can say that the fact you have a diagnosis can be a huge help to keep you and the baby safe. I had to be induced early because of my high blood pressure and of course my blood pressure didn't return to normal after delivery. With my second child the pregnancy was better but my blood pressure plummeted during delivery. I had the sensation that I was going to die and a load of nurses and doctors rushed into my room. I realize now my blood pressure probably plummeted. Life does always have risks and we can't see into the future but praise God, my children are now healthy teenagers. They were 20 months apart and have a very close friendship. Best wishes whatever you choose. I do know that information/diagnosis before my children were born would have helped me be healthier in my 20's. Although my dysautonomia reared it's ugly head during my first pregnancy, I don't believe that it made my long term prognosis worse.
  3. Rama mentioned caffeine- I do tolerate it and find it helpful. My doctor suggested a caffeine pill like no-doze to have a consistent dosage and to negate the diuretic effects of coffee. I still choose to drink coffee in the am and tea around noon but I thought this was an excellent suggestion. You can also cut caffein pills pretty easily if a whole pill is too much. I've struggled with crushing fatigue and also tried Provigil. Caffeine is nice for me because it's not in my system very long.
  4. I haven't suffered from depression but I have taken Zoloft, Lexapro, cymbalta, and Wellbutrin (not together) I have Hyperpots. Wellbutrin was a nightmare for me. Mayo clinic didn't prescribe it. I got it from another doctor. Cymbalta was ok- I consider it safe. It was prescribed for fibro pain. Lexapro didn't help my pots but no ill effects. The Zoloft was pre diagnosis.
  5. Now I'm depressed... It's 2014 and I would say they same exact thing. Maybe I can "almost work". I have two teens so my thought is Lord willing, when they are grown I can try to work again. When I push myself too hard there are consequences.
  6. I was told I did not have celiac. I was never scoped. After Mayo clinic suggested gluten free I did testing through EnteroLab. They don't diagnose Celiac per se but Mayo clinic called me a "presumed" Celiac. I tell people I'm celiac. It's easier. Celiac is really tricky to diagnose. I just went though the process with my son. Most Celiac people have certain genes, but some don't, most have certain blood work results but some don't, most have certain results after undergoing an endoscopy, some don't. My point is that you can have negative testing for celiac and have celiac. I think currently the medical community suggests that over 90% of people with celiac are undiagnosed. I had IBS symptoms so celiac wasn't an unusual guess. Keep in mind though it was a neurologist who diagnosed me- I was anemia and had low vitamin D. Apparently that is very common in celiac patients. My son had no gastrointestinal symptoms. He had high blood pressure and growth issues. 6 months off of gluten and he is now perfectly healthy. As for the vegan/vegetarian I eat meat, dairy, and eggs. I was really sensitive to dairy for a long time. Now that I'm gluten free I can eat dairy with no issues. It's very common for people with gluten issues to initially have dairy problems.
  7. For me Gluten free has been the most helpful thing. Dr. Fealey at Mayo originally suggested it to me in 2009. Cutting back on gluten didn't help. 100% avoidance from lipgloss to soy sauce has really helped me heal. I'm on very few meds. A tiny bit of nadolol and a birth control pill for my endometriosis. For me gluten free essentially resolved my IBS, migraines, vertigo, Reynaulds, fibromyalgia, and greatly improved my POTS symptoms. I can't say enough about it. I regret not doing it sooner but I mentally had a hard time with it and result were not instant. I think I felt better after 6months but some of my healing really took a few years of gluten free. I came back to add for anyone thinking of trying gluten free my suggestion would be to assume everything has gluten in it. I've been glutened by coleslaw and guacamole in restaurants. I assumed things to be gluten free that were not. Now that I have my children on gluten free diet I always ask or make certain it's "celiac safe". For example I used to eat dominos gluten free pizza and now I don't. I think my healing is directly related to being very strict about my diet. I recently reacted to eating French fries out of a shared fryer. even my dogs are o. gluten free food and I don't use any personal products that contain gluten. I treat gluten as though it is poison. It might be overkill but as they say "the proof is in the pudding". I'm feeling better in my 40's than I did when I was in my 20's. I really do think gluten free is worth a try for anyone with neurological problems or autoimmune issues. I just had to give it time and 100% effort to see results.
  8. Also- now I've had time to think. I can't say I've come up with any pearls of wisdom- but I did think about it I was able to work part time when my kids were small. That was huge. If you can't cut back on hours, I highly suggest trimming your budget if you are able to- for cleaning help. It's so hard to do household chores with POTS and you can save your energy for the little ones. I was too type "a" to let things go but really a messy house isn't a big deal long term. I spent too much time cleaning. When all else fails- ignore the mess. I made chores a game when I could to get my guys helping when they were little. If you have a teen or pre- teen nearby consider having a "helper". Usually kids are pretty excited to have a job and make even a little money. I should have done this- it never occurred to me to hire help. Absolutely allow yourself the right to grieve over your loss of "normal" health. Just believe me when I say a lot of healthy moms raise spoiled brats. It can happen quite by accident. Learn to say "no" (unless you already can) to outside requests. I look so healthy I wasted a lot of time and energy explaining why I couldn't volunteer for this or that. When I turned 40 something snapped and now I can say "no" and really not care if people think I'm selfish or lazy. I don't even explain any longer. People are judging me any way. They can do it without me wasting my energy. I don't know if I've helped you in any way. I just know how tough it is. It does get easier with time. Really it does. For years my homelife was essentially surviving. It was like living in a garden of weeds. Most days now I see blooms. Also my most important advice- you can't do better than your best. It's ok to be sick and not be perfect. You can't do it all. When your kids get older they are going to be so very proud of every little effort you've made. Mostly they are going to remember that you love them.
  9. Yes- I was essentially home bound and in and out of the hospital for a year or so beginning when they were in 3rd and 4th grade. I was symptomatic prior and extremely sick when they were babies and toddlers but they don't remember that time. I went back to bed as soon as they left for school and essentially didn't get up until they were home from school. I barely remember a few years of our lives. We relied very much in our Christian faith (still do) and as much as possible tried to view the positives. My children's character and maturity is far beyond thier peer group. We are a family and rely on each other. My biggest struggle was probably my son's worrying that I will die. He obsessively worried for a long time about my death. It has gotten better with time now that I am more stable but it isn't gone entirely. I worry about my parents dying too. Unfortunately dying for all of us is a reality. My illness has been a wonderful platform for us to discuss the most important topics. I understand "mommy guilt"- I had to get over it. My children have me. They have my attention when they talk. They know they are unconditionally loved. I may not be the "super mom" I wanted to be. God had something else in mind. Being ill streamlined my life in that I'm not as distracted as I once was. They are also wise in that they are not quick to judge or criticize others. I know how hard this can be on you. One of the worst moments of my life was when I was in my late 20's and my son was just a toddler. I was misdiagnosed at the time and was sent to NIH for a week. I had never left my children before. When I came home he was confused and ran from me crying. He was too little to understand that me leaving him (with my parents) was temporary. I am telling you this story to help you remember that they are not as damaged by your illness as you are. My son doesn't recall running from me- my daughter was older and was just happy to have a new Barbie . You love your children or you wouldn't have this concern. Trust me- love goes a long way. My children thrive on my love- even if I miss ball games, concerts, and can't play in the yard like I'd want to. Your kids can survive and thrive. Independence is a great gift for them also. The best thing I've done for my children is to really listen to them. Pots hasn't interfered with that.
  10. I have to take some time and think before I have a wise response. I just wanted to tell you that I've lived what you wrote. I went 10 years or more without a diagnosis and honestly my husband (met in highschool) didn't even understand. I just wanted to give you some affirmation- I've been assigned a teaching position in our church... People will not understand. They just can't. It's not meantmeanly most times. They just can't. So chin up to you- I can tell you that both of my kiddos are now teens. They are thriving and also have a maturity beyond their years. They don't judge a book by it's cover, they have genuine Christ-like compassion, they are not quick to judge. Also they know how to do the dishes etc. It became important that they learn household tasks early.
  11. Missing from the list in my opinion is celiac disease.
  12. Udi's makes good hamburger buns but they are pricey and only come 4 to a pack. My family really doesn't like the Bobs red mill but they do like Pamela's mixes. I do suggest having corn starch on hand if you make a gluten free pizza crust. I've found the dough very sticky. I don't know first hand but a friend told me that Udi's bread is sold at Costco. If anyone has a suggestion for gluten free fried chicken I'd love to hear it.
  13. Spinner are you a hyper pots person? You sound like me with the tennis thing. I just got a new racquet and bag for my birthday a few months before I was properly diagnosed. I gave all of my tennis stuff away. Tennis and jumping jacks were pretty horrible for me. Some yoga, Pilates and swimming in the pool have been the best. I can walk and walk. The only thing worse than running is standing. The only thing worse than standing is standing with my hands over my head. Also caring loads up stairs is harder on your heart. A cardiologist at mayo told me to be careful about carrying things up stairs. Edited to say - I am very out of shape but I was very much in shape before my diagnosis. I was always embarrassed to be slim and fit yet I would huff and puff walking up stairs. I had so much trouble with tennis it was crazy. I decided I was unfit and worked out harder. One day I just cried and cried because I couldn't do a DVD Jillian Michaels shred. I also passed out on my elliptical. My house is filled with exercised equipment and fitness dvd's. Excessive exercise made me worse. Mild consistent exercise is helpful. I'm a type A person by nature. Moderation is something I am learning. Diagnosed in 2009, sick for at least 15 years.... Right now the best treatments for me are 1) low dose nadolol 2) gluten free diet- the stricter the better for me. 3) mild consistent exercise. Swimming is the absolute best. I have leg weights for the pool. 4) (I'm female) hormonal regulation with birth control pill 5) careful supplementation. Now small dose q-10, D, and magnesium as well as others. I don't take them every day. More is NOT better. I mix up my supplements 6) jury's still out on dairy. It's not helping me to eat it but I not sure how bad the damage is. 7)I still take medication to sleep. No meds would be best but sleep is better than no sleep. 8) TREATING/PREVENTING allergies especially sinus rinse 9) compression 10) rocker bottom shoes 11) seat canes needed 12)stopping medications when able. I was on Klonopin, antidepressants, etc. as soon as I felt stable I would try to safely reduce medications. I may always need some- but again less is more IMO. I I hope you find some relief.
  14. We like gluten free bisquick for pancakes. It's really good with the addition of blueberries.
  15. Yes I've had several I was "deconditioned". It's absolutely true. Being sick has made exercise very difficult and I am deconditioned. It doesn't take long. I also was very short of breath and may not have pushed myself as hard as I could.
  16. Corina- I lost my daughter's Christmas gifts- all of them. Christmas Eve I tore through the house looking for them. I was panicked and in tears. After almost an hour of searching my husband asked if I would have hidden them in the garage. Eureka... The trunk of the roadster. I was devastated. I spoke with my neurologist about it. Ambien can cause memory problems as can many other drugs. I do still take Ambien but I know my brain works better off of it. On the other hand, lack of sleep makes me dopey also.
  17. Oats are a problem for many. My son is oat sensitive. Gluten free oats or regular oats, he has the antibodies against them.
  18. Ok -hyjack to POTLUCK- did you get a pet scan? I had a "shadow" or "spot" on my MIBG but it was nothing. Just wondering if a pet scan would put your mind more at ease.
  19. Oh no! Please don't apologize Sue! I only meant that to get a proper diagnosis we have to see the correct type of doctor. I guess I don't write clearly. . I had to get to a good EP and neurology department.
  20. Sue, unfortunately I think it depends on what type of doctor you see. I stay away from endo's. They always see "pheo". Even after pheo was excluded as a diagnosis for me, a top endochronogist told me that he was sure I had a pheo it was just "too small to see". That was almost 12 years ago. Hmmm... No pheo.
  21. So I cannot speak to your results specifically. I can tell you that I will test positive for a pheochromacytoma via labs. I was diagnosed by Johns Hopkins with a pheo and sent to NIH for a full work up with one of the leading experts on "pheos" I do not have a pheo. I have hyperadenergic POTS. Hope this helps.
  22. Look up the research of Dr. Hadjivassiliou if you need encouragement. I apologize for not having the details but I recently read (somewhere) an article suggesting that problems with gluten can cause the body to make auto antibodies against the pituitary. My mayo clinic neurologist suggested I go gluten free in 2009. I mentally had trouble so I used EnteroLab and also had a genetic tests.
  23. I'm a big proponent of the gluten free diet. I found for me anything less that 100% gluten free wasn't helpful. Also keep in mind that casien is very similar in molecular structure to gluten. Some people need to be off of casein while their body heals. It's totally worth trying in my opinion. My teen son went gluten free over a month ago. My teen daughter has been gluten free for almost 2 years. I'd highly recomend gluten free for anyone with IBS or neuro symptoms. I know I've said it before but it has been the best thing I've done for my health.
  24. It was helpful for me. I had no trouble with it but I did gain a little weight. I also found my vitamin D levels were too low which increased my pain. I just wanted to mention that in case yours haven't been checked. Thankfully I was able to discontinue Lyrica. I worry about new medications because I've had scary reactions like many of us. For me Lyrica was very safe and it did reduce my pain.
  25. They help me. I'm don't have any at the moment. Like all compression- fit is key.
×
×
  • Create New...