taylortotmom

I am sending love and support your way. We have been touched by Debbie's insight, concern, and humor. Although she may not be on the board for a while, please know that she will be with us in our thoughts. God bless Debbie and your family. The tide will turn. We went through a very similiar experience a few years back and I know that pain well. Peace to you. Carmen

I am a migrainer- I feel your pain (literally!). I hate to burst bubbles but.... I had a hysterectomy two summers ago. The first year was awesome as far as the reduction of migraines, I still got a few but nothing like I did prior to the surgery. But..... they're back. I'm so frustrated! I'm on estrogen replacement (the patch) and I haven't been as consistent as I could with changing the patch so I hope that is why I am having an increase in migraines- the peaks and valleys of estrogen. Don't you just love being a woman! Although, as a sidenote, the day I had my hysterectomy was the third greatest day of my life. Carmen

Happy Birthday- have a great day but don't overdo it. Oh what the hay, overdo it- it's your birthday (21st at that!). Have fun! Carmen

Hello and welcome. There is a lot of good info on the main Dinet page that might can answer a lot of your questions. "Typically' and that's a dangerous word here, but typically, dysautonomias that involved postural hypotension are diagnosed via the Tilt Table test. It is not the end all be all but for most folks it acts as a bench mark as to what might be going on in your body when you have syncopal feelings. You may also want to read over some of the past discussions here and do a search. I know it is so overwhelming especially when you don't have a diagnosis. Just remember knowledge is power so read, read ,read and ask, ask, ask. That's what we're here for- good luck! Carmen

Congrats! I'm living out my Oxford dreams vicariously through you so keep us posted. You're gonna do great! Carmen

There have been a lot of discussions regarding the pros and cons of ablation so I would recommend searching under that term. Personally, I have not had ablation but I have had a femoral arterial run-off which is simiar to a heart cath. I actually have a permanent heart cath that was placed in the end of March that allows me to get daily iv treatments via my port-a-cath. Of course, I have had several echocardiograms, chest x-rays, and blood work including the ones that test for heart attack and high cholestrolol (sp?). So as far as cardiac procdures that I have had are as follows: port-a-cath placement, run-off on my leg, transesophageal echocardiogram (TEE)- that was awful, and again all the run of the mill echos, x-rays, bloodwork. I know I'm forgetting something but I just can't think of it right now. But the main thing is to make sure your cardiologist is knowledgeable about dysautonomia and what procedures are beneficial and which ones can cause more harm. You'll probably get a lot of different responses to your questions and I promise we aren't trying to confuse you! There is a lot to comprehend and everyone's experience is at least slightly different if not totally different. Carmen

What type of eps study is your cardio wanting to do? I have had most procedures and will be glad to share any info I have with you. As you will see from the posts on the board the diagnoses, treatments, and level of disability varies from individual to individual. Many people here have POTS but not all do. Some have MSA, MVP with dysautonomia, and a host of other related conditions that can contribute to dysautonomia. Some people find improvement in sxs after pregnancy some find pregnancy and childbirth make sxs much worse. So, there is A LOT of gray area with all of this stuff. Anyway, I am so glad you have decided to join us and hope we can help you find some answers. Carmen

Congratulations- there is no greater blessing! Carmen

I'm really sorry about your experience. I wonder if a 30 year old man would have been sent on his way so quickly? Just a thought. Now about your chest pain. I had very similiar sxs and called the nurse that works with my cardio. Fortunately they are very skilled in dealing with young women with dysautonomia. She explained that based on my description it sounded like it was related to my MVP (mine occurred during attemping to walk for exercise) and to drink before, during, and after any workout. The sxs really scared me but she reassured me- she gave me some techical info about betas or something firing off in my heart but anyway, it made sense at the time. If you ever have doubts that concern you about sxs don't let people brush you off. They might act irritated but I would approach if by saying, "I know you are busy but this has really been bothering me. Can you help put my mind at rest just by running an ekg just to be sure? " Remember the honey- you can always kill more flies with honey than vinegar. Always thank them for their time (people like to know that we don't just abuse their or our own time). It may seem superficial but nieceness goes along way. I even used this approach with an er doc who woke up the wrong side of bed (everyday). I immediately told him "Happy Memorial Day". Then proceded to tell him I was no there for pain meds but my leg had really been bothering me and felt like I needed to check it out, I ended up getting an ultrasound on my leg and a follow-up with my cardio. Not all expereices turn out this well, but I can tell you it sure does not hurt to lay it on thick sometimes (but be sincere). Carmen

Unless I'm totally confused I think that is my new med. It's sometimes in the same class as valium? But.... what it helps me with is these weird seizure type things I have in my legs at night (extreme restless legs) and I have noticed it helps with migraine pain if I take enough of it. Weird- I know. Carmen

Oh yeah, so goes the brutal force of dysautonomia. So sorry you have to be here but I think you will find a great source of support and knoweldge here. The tilt table will likely give you a diagnosis (but not always). Most of us are on florinef (it raising your blood pressure for one thing). You will learn that there are no "typical " stories here. Many people have POTS but not all do here. I don't for one but I get the pleasure of being tied to an iv pole every day so I get my own joys. I apologize for sounding sarcastic but I am sick as a dog right now with a horrible migraine but I do want to welcome you and hope we can be of some help for you. I know- it stinks- royally. Carmen

Julia 59 brought up an interesting topic I have pondered. Have whose of you with heart problems noticed a correlated with bad teeth? I've had it and many people I know have- esepecially, young women seem to have this connection. Anyone else noticed this? Carmen

Happy Birthday- the best is yet to come. Okay, I've watched too much Desperate Housewives- but seriously, the thirties are cool in their own way. Have an amazing year! Carmen

I am so sorry. My thoughts are with you. Love, Carmen

Poohbear is right about depending on your personal situation it might be better to pay more for a PHD or MD for documentation purposes. What I am referring to is for those of us who need some long-term help dealing with the issues surrounding chronic illness. Once you get into serious mental illness, a different set of guidelines apply. One thing I left out was community mental health centers. Again, this is going to depend on where you live and your personal needs but they can be a good resource for some. There is no universal answer that is going to apply to anyone- ever. But, the other suggestions I gave are some things a lot of people might not have been aware of- I wasn't it until I worked in the field. As far as the cost, I stand by the $50.00 quote at least in the various parts of Alabama I've lived in. However, this is what a PUBLIC agency would charge- when you look at a PRIVATE agency, the cost goes up- big time. So, just some considerations. But, I still stand by my original point which is- don't let the fear of cost or inaccessibility keep you from getting help if you need it- but be careful about who you go to. Make sense? Carmen

Oh yeah, as a side note: part of the requirements in graduate school was to go through counseling yourself to see what it feells like on the other side of the couch. Wouldn't it be great if all med students had to have a "mystery illness" and be a "patient" while going through school. You know, the same way they make teenagers take home those fake babies to see what parenthood is like--- oh, but I digress... Carmeni

Hi, Lauren we have discussed this recently (I posted a similar question!) so you might want to do a search. Basically, some people have been helped and some have had their symptoms made worse (more by the ablation than the actual pacemaker). The pacemaker talk comes up almost every time I see my cardio so I totally understand your question! Carmen

Counseling for various reasons (chronic illness, depression, and a combo of the two, etc.) has been discussed in many threads on this forum. I would like to add some information that might be beneficial. I am a former Master's level therapist and would appreciate the opportunity to explain how the "system" works and how counseling can be affordable for anyone. Okay, first Psychiatrists are MD"s and are the only mental health professionals that can prescribe medicine (legally). They are extremely expensive and almost always overbooked. Rarely do they do any substantial one on one counseling anymore. You will likely get a brief interview and a prescription if you have an appointment with a psychiatrist. A psychologist has a PHD and may do one on one counseling but USUALLY are the ones most likely to do "testing" and evaluations for severe mental disorders or learning disabilities. Again, expensive and often hard to get in as far as appointments go. Psychiatrists and psychologists are definintely crucial in the treatment of mental disorders but for us looking for long-term care for dealing with chronic illness let's move down the tiers. Now we are to the Master's level professionals. Master's level therapists and Master's level licensed Social Workers can be great resources for us. They often are supervised by either a psychologist or psychiatrist and can help you get the correct prescriptions you might need (just can't write them). The running rate is generally $50.00 for a 50 minute session. Insurance generally pays for these professionals AS LONG AS they are supervised by one of the above mentioned MD or PHD professionals. The amount of therapy required will vary from person to person and "crisis" to "crisis". You can generally expect to see your therapist at least bi-weekly and oftentimes more- at least in the beginning. Now, this is not the end of your options. Churches many times have "free" counseling for their members provided by memebers who have been trained to provide the counseling. The counselors are schooled on when it is appropriate to refer to a more skilled professional. If you live in a college town, you are in luck. Almost every university has counseling services open to the community. The fees for these are on a sliding scale and sometimes are even free- especially, if you agree to see a "student" counselor who is receiving supervised training. I would have to alert you to some things out there, however. Be cautious of church based counseling that is not "supervised" by a mental health professional or whose "counselors" have not received training on "when to refer". Non profit agencies can be good but look for the letters. In other words, make sure your "therapist" has a MINIMUM of a Master's and license (depending on your state) and is SUPERVISED by someone with more professional experience. I know this is a long thread but I think it is very relevant to dysautonomia and chronic illness. We get told we are crazy and its all in our heads all the time it is easy to dismiss the legitimate need for help when it does present. I hope this helps some of you understand what counseling is and what to be wary about. Thank you for reading. Carmen

Go for it girl- you've got nothing to lose. Carmen

It's so nice to hear some good news! See... we told you it would all work out. That is great about your husband being able to be home Mon- Fri and help with the kids activities. Don't overdo it on the weekends though. I feel your pain because I've been a "Married single" for our entire marriage and it can get really hard. Thanks for the update- sounds like things are going great! Carmen

Without a doubt. My cardiologist has even stated point blank that the least little illness will knock me down for weeks so be very careful about getting any type of viral infection. Bacterial infections can at least be treated with antibiotics but viral stuff stinks because most of the OTC for it we can't take!!! Wash hands, wash hands, wash hands (think Lady MacBeth...). Carmen

Yes, I get those weird tight band feelings on occassion. I think it has too do with my weird (Dysplastic) vessels. In other words- my veins are not hardened- they are softened and weak. It makes me think that the vessels are stretching too much and about to pop like a rubber band. But honestly, I don't have an intellectual response to your question other than, yep, know what you're talking about. Sorry. Carmen

Nope- not a failure. You're having a rough time. I can understand backing out of the inpatient- it's scary. You don't know what will happen or what "labels" you'll get. You've probably been misunderstood and already "labeled" just throught the course of this illness, right? Paige.... I am very sick BUT I was once a therapist. Even as a therapist I had to deal with the "fear" of those labels myself because for so long no one knew what was wrong with me. I thought I was crazy- I really did. But.... I'm not and you're not. You are sick with a brutal, cruel illness that zaps life and what you thought life was going to be right out of your hands. Depression is not only understandable -it is expected. My recommendation to you would be to really look into what services are available in your area. Inpatient may be your best option but there might be other options that work well. For example, even though psychiatrists are the only mental health professionals that can "sign-off" on prescriptions many Master Level therapists work under the supervision of a psychiatrist. This means, your therapist would be able to give you a lot more time than an MD but would still have access to get you the meds you may need. Don't dismiss Licensed Master level Social workers either. They too spend alot more face to face time with their clients than psychiatrists and psychologists and are much cheaper and more accessible. Support groups- another feasible option. Doesn't have to be about chronic illness but that would be great. The point is- help comes in a lot of different forms and you don't necessarily have to go into a hospital for treament. What you do have to do is be honest. If you are a risk to yourself or others- you get admitted now- period. If you don't do it on your own- your husband must. If there is even a tinge of doubt- go-now-period. If you feel like you are not going to harm yourself or others and feel like you are overwhelmed and need help- then, the above mentioned advice is for you. Either way- don't dismiss your feelings. Depression is serious business but unlike dysautonomia it is understood and HIGHLY treatable. Get help- you will be glad you did- I promise. Please post tomorrow and let us know how you are feeling. Carmen

Roselover, your optimism and encouragement have served as a virtual bouquet for all of us. I hate that you are having such a rough time. I hope Vandy is an informative and beneficial experience. Keep us posted (literally!) when you feel up to it. Take care! Carmen

My thoughts are with you- you have taken a very courageous step in the right direction. Good luck. Carmen