taylortotmom

I think stomach symptoms are quite common when getting too hot whether or not someone has dysautonomia. I live in Florida and I am already dreading the summer. It has been up to 100 already. In fact, I can't go outside to get the mail- I- and my two kids are essentially homebound. We go swimming at night- the water is too hot during the day. Symptom-wise, it takes just seconds of me being outside before I get brutally ill. Seriously, if I am out in the heat- I pay almost immediately. I am praying my husband gets transfered soon- seriously, I love Florida but I just cannot handle the heat Carmen

Amy, I'm so sorry things are so incredibly hard right now. I hope you can get some relief soon- you've had more than your share of pain and illness this year Carmen

Ernie, that is so awesome!!!! What great news to read this morning- hope it continues to help you tremendously Carmen

Everytime I read the title of this post, it makes me want to curl up on a window seat and start reading. "Springtime at Mimosa Hill" just sounds like a wonderful, historical romance- lol ) Your pictures are precious and the peony is beautiful! Thanks for sharing a little sunshine Carmen

Wow, glad you had a good experience with something that usually isn't a very good experience- lol. Kudos to compassionate doctors! Thanks for checking in- hope you are doing okay Carmen

Well, you state you are fatigued in the morning now which leads me to think it is likely a dehydration issue (chances are you don't stay up and drink fluids all night). For me personally, I must take my Florinef first thing in the morning for this very reason. Another option might be taking half of your Florinef first thing in the morning and then the other half later in the day tp try and control the peaks and valleys you are having. Just be consistent when you take it. Also, a major increase in fluids (especially something with high sodium content such as Gatorade) may be required. Generally, the worse you feel, the more you need to drink. These are things to discuss with your doctor when you go back. Based on what you wrote, in my opinion it sounds like the store opening kicked you in the behind and has cause a relapse of symptoms. Unfortunately our relapses can be brutal- good luck- Carmen

Psychotropic drugs do not need to be played around with- this can be extremely dangerous. Your doctor needs to know exactly what you are and what you are not taking. There may be some other drug that can replace the one you feel is not working. A good relationship with your prescribing doctor is crucial. Some medicines can be stopped easily but this classification of drugs are not them- please discuss this with your doctor before stopping or changing your dosage. I say this because you state you have ADD- I sincerely hope you are seeing a psychologist and/or psychiatrist to insure this is the correct diagnosis and that your medicine protocol is appropriate. I apologize if this sounds curt- I am a former therapist and cannot tell you how dangerous it is for a patients to stop taking their medicines without consulting their physician. Just be aware this is not like stopping an antibiotic or other medicine. When you start dealing with mood-altering drugs- that is when you get into a very scary and dangerous area. Please be careful. Carmen

Interesting point. Maybe so. I think a lot of what we do, we do unconsciously so that we don't pass out. I never realized how much I pace until my legs started killing me- well, it makes sense since I can't stand in one spot for any length of time without getting ill. I know I look like I am on drugs when I'm in a check out line because I'm always moving something- leaning over the cart, or lifting my legs, I just do it and don't think about it unless someone says something. So, I, too am a jitterbug- doing the Potsy Dance, I guess But you're right it can really tire you out

That is terrifying- goodness, I am so sorry you all have had such a hard time. My thoughts are with you- take care of yourself during all this- Carmen

I had severe endometriosis (on my lower COLON of all places and both ovaries) and ending up having a total hysterectomy (after years of horrendous 21 day periods at times). I realize this is not what you are experiencing- but not to sound like a martyr- my recovery from the total hysterectomy was awesome. Seriously, I was so glad to have that surgery I could have danced in the halls the next day (well..... maybe a month later- lol). But really, it just depends. My hysterectomy (major surgery) had very little recovery issues for me but my pacemaker implant (minor surgery) recovery was awful- seriously, that one about did me in. So, it just depends on your body. For me, there is no rationale whatsoever to what can be traumatic and what isn't in the pain department. Good luck Carmen

One drink at night (when I can go to bed) can be quite helpful. However, I would NEVER combine Klonopin with alcohol. I either take my Klonopin or I have a drink, but never both. They have essentially the same effect on me (calms down my Restless Leg Syndrome at night and relaxes my body). If I do have a drink, I make sure to also drink water as alcohol dehydrates and that is the last thing I need

Okay- I'll give you two of my all-time favorites: I was told my rectal bleeding (excessive) was caused by stress- now, I have heard of stress reactions but I think I would have picked something a little more dainty than that! I was told to learn biofeedback to increase the circulation in my legs to keep me from passing out. Okay, legs do your duty- fill with blood- and keep me upright! Does that mean you can think your way out of a heart attack??? My husband was dumbfounded- he was there with me at the ER when that quack doctor told me that. This thread actually makes me quite sad- the only thing insane about this disorder is what we have to go through to get adequate health care BUT, I have a fantastic doctor now and hopefully, those days are behind me

My attorney sent me some valuable information when I was approved for SSDI 3 years ago. Here are some of the questions she answered: "Do I have to do anything such as visit the Social Security Office or complete some forms in order to get paid?" No. It is automatic for your benefits. If you have children who were under the age 18 (or under the age 19 and still in high school) at any time after your "date of entitlement", it will be necessary to put in an application for them to receive benefits; but your own benefits will still be processed automatically. Social Security disability benefits for most people are processed in Baltimore, MD. Benefits of those people who are over age 55 are processed in regional payment centers. "How long will it take for SSA to pay me?" As a rule, it takes one to two months for back benefits to be paid and monthly benefits to begin in a social security disability case in which no SSI application was ever filed. (When there is SSI involved, it takes considerably longer). But these are only general rules. In some cases, it takes as long as three months for back benefits to be paid. When it takes more than 90 days for back benefits to be paid in a SSDI case, it may mean that there has been a bureaucratic mix- up somewhere in the system. "Will I receive a notice from SSA explaining my benefits?" Yes. That notice is usually called a Notice of Award. This notice will show the "date of entitlement" and the amounts of benefits for all months of back benefits. It will show the total amount of benefits payable to you. It will tell you when you will receive your money each month. It will show the amount of benefits withheld for direct payment of attorney's fees. It may also give you information about your Medicare eligibility and monthly Medicare premium. It may also give you information about when to expect a "continuing disability review". "When will I get the Notice of Award?" The Notice of Award will come around the time that you receive your check for past-due benefits. It often comes after you receive your check for past-due benefits. My attorney was a former nurse and did a fantastic job of addressing potential questions. If any of you have any other questions about the SSDI process, I will be glad to post the answers she mailed me. These are her answers, not mine- but I will say that she hit the nail on the head with me. Everything went exactly as she said it would. Hope this helps- Carmen

Remember there is a six month waiting period between onset date (date of disability) and the date you become "eligible" for SSDI. Medicare starts 2 years after your DATE OF ELIGIBILITY. For example my onset was dated Jan. 1, 2003 with SSDI becoming effective 6 months past this date- June 1, 2003 and Medicare kicked in two years after this date which means June 1, 2005 I became eligible for Medicare. Although you were disabled for the initial six months- you receive no benefits for that time because it is the government's thought (however, inaccurate it may be) most people can deal with short term disability (six months or less) with personal savings or employer's disability. The Social Security office is actually correct- just wait it out at this point. Chances are it will take far less than 60 days for your benefits to kick in. You will receive information in the mail- however, if you have your benefits set up to be direct deposited you may get your back pay check in the bank before you get any written info. Regarding attorneys fee, I may be wrong but I do not believe they continue to accumulate fees while you are waiting for your money. In fact, they can only receive 25% or up to a certain amount (something like $6,000- whichever is more). This is determined by the Commissioner of Social Security- I just went and pulled up my old paperwork. I believe the paperwork you sign giving the attorney their fee must be approved by the Judge (I know it was in my case) and they are very specific guidelines about how much the attorneys can make off disability. So, just because you are waiting for your money does not mean they are making more money, necessarily. Hope this helps- Carmen

Hi, Ling. I can unfortunately identify with what you are describing. I experienced several small strokes and TIA's about four years ago before finding the correct medical protocol for me. The most important thing is to keep a major stroke from occurring- as your doctors know. If you have not found an autonomic specialist, try to do so at all cost. For me, it took 18 months of at-home iv therapy and a pacemaker and various trials with meds before I felt like I was not on the verge on another stroke at any time. It is a terrifying feeling. A pacemaker might be appropriate for you. I don't know. It isn't the end all be all but I do know how scarey those "unconfirmed" strokes are- especially when there seems to be some confusion about why they are occurring. If I can help you in any way, please message me. Hang in there and good luck- Carmen

Yay! It's time for some good news to come your way Carmen

Amy I am sending you as many prayers and good thoughts as I can- I am so sorry you are having to go through this. Peace and love, Carmen

Yay!!!!!! Congrats! Carmen

Glad to read some good news tonight. I'm so happy you have a great trip to Disney with your kids- that is such a huge thing. I hope you continue to do well and can enjoy many days of less symptoms. Carmen

I take my medicine almost immediately after I get up and it has made a HUGE difference. Formerly, I would take one Florinef around mid-morning and another in the afternoon and my beta blocker mid-morning or so. I now take everything (both Florinef) with my first sip of coffee and it cuts my "hung-over" time down considerably. So, instead of feeling like a truck hit me for the first couple of hours every morning, I feel realtively good after about fifteen minutes. Relatively good being a very subjective term, of course Carmen

Fear can be debilitating as you well know. Are you familiar with the self-fulfilling prophecy? It's the concept such as in this case, the fear of an attack makes one behave in a manner that induces the attack- if that makes sense. It goes back to control. In my own situation, I have learned that while there is so much about this stinking disorder that is unpredictable, the more I learn about my body and how best to ward off situations that promote "attacks" the more in control I feel. The more in control I feel the less likely I am to have an attack. I truly get what you are saying. Many, many times I have gotten afraid of having an event in line at stores, so I have to mentally calm myself down. I keep Gatorade in my purse and while I stand in line I shift my legs and drink Gatorade. Soon, I feel much better. If you allow the fear of "what if" to dictate what you do, the disease wins. And I personally, REFUSE to let this thing win. Sometimes, it does. Yes, there are some things the best thought processes cannot undo- I get that. Trust me, I have been in the hospital enough to understand you can't "think your way out" of dysautonomia. But I do think you can empower yourself with the ability to "calm down" in anxiety inducing situations and yes, as silly as it may sound, going to the store is very anxiety inducing for us. The lights, the crowds, the standing, the pushing carts- it is physically taxing- not to mention any driving that might be involved. Another thing, I notice you are on Klonopin- occasionally. This might might be part of the issue. It might be more appropriate to have a steady low dose instead of on an as-needed basis. I know that my anxiety is much worse off Klonopin than before I ever starting taking it. I do not handle Klonopin well- "occassionally"- I need a more consisent dosage. Just a thought- so discuss it with your prescribing doctor if you feel it might be the case with you. So good luck- I hope some of this makes sense. But you are certainly not alone in your fear but there are ways to manage it rather than it managing you. Carmen

Oh, goodness, I'm so sorry to read this tonight. Amy, your in my thoughts and prayers..... Carmen

Goodness, Nina- I just saw this tonight- I'm so sorry! This royally stinks. I'm sending good thoughts your way- and yay, for Wilbur for helping take care of his mommy!

My wonderful cardiologist, Michael Aikens, MD in Opelika, AL. I have been with him now for six years- he diagnosed me and I travel six hours one way to him now. He has dysautonomia himself and is a fantastic physician- his patients absolutely LOVE him.

Melissa, There is little I can say that can comfort you right now. I just want you to know, Melissa, that you have been an angel on earth to many, many people- especially, on this website. Please feel the prayers and positive thoughts that will be sent your way- With much love, Carmen