pamela

Went to see my Cardiologist 50 miles away today and the appt went pretty good. My BP was mamageable at 104/60 and my pulse was an excellent and steady(while sitting) 74bpm and only skipped a beat or two while standing and talking to the doc for 5 min. I did get a little dizzy and start to slur my words but my pulse stayed below 100. The new regimen of Digitek and Coreg are helping me a lot, but the Cardiologist is concerned about th2 12 lb weight gain in 3 weeks. He says if it goes up any more then we will start a diuretic in the morning. I am retaining fluid in my belly and some in my chest wall, (that is why my chest pain has been worse), but my heart is pumping more efficiently. I also found out that the new Cardiologist I will be seeing in January has a few Dysautonomic patients and is very familar with this illness. THe only bad news was the weight gain, and no relief for the chest pain yet. Once again I have to see my Primary care Provider. My typing probably ***** but you should here me try to put a sentance together tright now. I did blank out twice during the weekend while house cleanoing But hey! The doc says my heart and blood vessels/arteries are very clean.

I agree that POTS sounds a bit off.. and the reaction I get is a dumbfounded look. The best reaction is when you tell someone that your are feeling "Potsy" today. I think some people think I am making a reference to the Happy Days Character named Potsy Weber. So now I say that I am feeling symptomatic to the people who know whats going on with me. But trying to explain to someone that the reason you are so slurrry and dizzy is because of POTS is pretty difficult, frustrating and sometimes dang Hilarious.

Good luck with your Pace maker and Merry Christmas!

You are all right. Unfortunetly this was a 1st visit to my new PCM and he is in Statesville NC. We are military active duty here for two years while my husband recruites for the Army. I had just got my diagnosis in May 05 and finally found two docs that were listening and studying up on this whole dysautomnia stuff. THen poof we moved. So I have to start all over. The docs at the military base are really out of the loop with this POTS and OI stuff. They were cluless in 04 when I continued to have chest pain and lightheadedness after a year from having my Pulmonary Embolisms. So I am dilligently looking for a doc that the Tricare people will work with and who is at the very least , knows and reconizes this illness as what it is and will help me out a little. Thanks for all the support and advice, Pamela

Your little blessing has grown up to be a BIG blessing and inspiration. Let her know that her words touched us all and be thank ful for such a beutiful spirit that your daughter has.

Not everyday but more often when I am having Potsy days

Thanks Wareagle for your concern. The symptoms do worry me especially since they mimic many other things like strokes. I have been to the ER so many times in the past year that I am talking myself out of it. I am keeping my family informed (sometimes I feel like I am whining to much and they aren't listening) so that they know if I get to bad or pass out they can tell the Doc what's going on. I will take your advice and promise to go to the ER if I feel too bad. Thanks, Merry Christmas

Dizzy, I am sorry you had a bad night. I had one too and I felt bad and had to get up and walk awhile, lay for a while, I tried my heating pad, I ccried on my Great DAnes shoulder, Made coffe at 4;00 am for my husband when he gets up for work, I took a bath, I was sick, my head felt as if I was carrying 2 tons of burning coal in the front above my eyes. My legs hurt, they were restless, then they cramped, then they got cold and the tremors began, I peed 7 times in three hours then gave in to a Hydorcodone and 1 tbsp of mineral oil to counteraffect the costipation from the pill. I finally slept from 5;15 TO 0655 and am now up for the day. At least we aren't alone. There are those that know how we feel and will listen to us. Try to take a nap as soon as you can. I send down your ropes to get you out of your potsy hole as soon as I remember where I put them!

I am soooo glad that I decided to read up tonight. I origanally was going to get on here and whine A LOT, but I just read your question an neck aches and etc. Anyway, for two weeks now the lower part of my neck, right shoulder blade and all the way around to my breast bone have been spasming and the pain was and is still excrutiating all of the sudden. In between pains I am left dizzy and my eyes are sensitive to movement, the front of my head is heavy feeling and the brain fog is terrible. About 30 min after saying to my Dad " At least my speech is giong crazy", I started slurring words and losing my thoughts. My typing is atrocious and stuff. The ER was baffled last Saturday and checked me for a blood clot in the arm amd neck and that was negative. They prescribed meds for pain and home I went. I followed up with my regular doc who also was lost. He knowes nothing about Dysautomnia and said I probably have muscular pain or a shoulder injury. But for the last two days the pain is more intense and i keep blacking out then getting up and I am o.k for a few minutes, the right leg gives out and I quiver on that side. Now after reading your post I know that is just another thing for me. It is sad but at least we are not alone. These symptoms of ours can be scary and frustrating. Thanks for listening and I hope your POTSY days end soon.

Becky, I am sorry that you are going through this. Emotions that are extreme aggrevate my symptoms and vice versa probably. Try to stay positive and take care of yourself! Pam

I totally understand the frustration. My legs only do that when I stand or dangle my legs over furniture like the exam table. THe legs get off colored and purpleish then they get white spots scattered over them and they are cold. At night I notice the coldness and it really aggrevates my restless legs. Sorry that you are so frustrated but ..at least you aren't alone.

I constantly crave sugar and I really try not to indulge. I f I eat one sweet thing or something real high in Carbs ( like french or itallian bread) I go end up over doing it and I can't stop eating. Then when I am done I get so sleepy and can't concentrate and am barely able to walk because I am so uncoordinated and tired. After a big meal I am Hypoglycemic so I know not to overeat and I can jus imagine how high ny sugar levels are after sweets and heavy carb binging. So I really need to stay in control. My blood suagr is very low in the am and my meds have side effects that interfere with the bodies ability to control insulin and sugar. The sude effect wasn't listed on my pharmacy paper but after experiencing some weight gain and bad reactions and cravingd I checked out a the meds on line and discoverd how they can effect your body. Prevention is the key and so is watching what you eat. I know this but is so hard to eat healthy.

My blood pools especially after eating and while standing in bothe my hands and legs. The hands and arms drive me nuts because my lose rings end up getting stuck and my whole hand gets so hot and sweaty. THen when it goes away my hands are cold and thin but my veins are always promonent. An old doc had me cut back on salt and increase water but now the standard for pots is increase fluids and salt...So what's a girl to do??? MODERATION, MODERATION. ha ha!!

I took the f;orinef for about 2 weeks, maybe a little less. The florinef is normally prescribed to elevate your BP but you do have to watch the side effects such as water weight gain and you blood glucose. The florinef actually helps your body to maintain liquids in any form and you may get some swelling that may effect your heart rate and its rythm. It is suggested that you dring plenty of water and take a pottasium supplement to decrease the side effects. This is what happened to me..I began the florinef and my BP did come up but I gained 17 lbs ib 3.5 days and my blood glucose went sky high. I was not on a beta blocker at the time or a pottasium supplement. My body reacted badly and I grew more tachy and when I stopped the florinef my BP dropped and my heart rate went way to high. THe fluid retention and electrolyte embalance from this caused a heartattack that was corrected by pottasium IV, iv saline , iv plasma to correct the hypovalemia from the stopping of Florinef . It is all very confusing. Upon release the second time I was released form the Hospital the Doc put me on Nadolol and the pottasium w/o florinef and my BP dropped but my heart rate slowed alot too. That can sause a stroke and the symptoms of a stroke quickly. What ever you experience, if it does not feel right go see your DOC or call your pharmacist Florinef and a beta blocker ( which is originally used to lower BP) does seem contradictory to me but I am no doc. I hope you feel better soon pam

MM, That is similar to my old regiment. The advair was O>K> but after years of using it , the medicine became less affective and using the Flonase made my nose to dry and gave me nose bleeds. I use the saline rinse and sometimes a little jell is my nose is to dry . Benadryl knocks me on my butt for about 12 hrs even at 15mg. The advair also made me hoarse even if I brushed and gargled salt water. The Spiriva is expensive but very effective against infections because it opens up the lungs all day. Unfortunetly I was off of it for 2mos because it is a steroid and I was recoverinf from a bacteriel tummy infection after my upper GI and lower GI scope. I feel pretty good right now and I am not as run down feeling as before. I actually made it alll the way around the mall without sitting down yesturday. THe Nadolol was making me tired but the Digitek and Cored combo seem to have stabilized my irregular heartbeat. Plus my BP is not dropping to bad. THis Am it was 102/73 with my pulse at 76 before getting out of bed. So I think I may have found some relief. Pam

Thank you Becky. I thought signature ment, you know to sign you name or such. Can I blame this on POTS? I feel really silly. THe cough med with codeine is working very well and I amm off to get some sleep until one of the living creatures in my house wake up tp POtty. Thanks for the help Pamela

Hi ! Chase Baby, Chase dog, Shampoo carpet ( sometimes I have to sit down to do this),cook, clean, READ books, Research on meds and treatments for this bummer illness, Dr's appts, pay bills,walk .5 miles an good days, bathe, play in tub with baby, shower with dog, and phone my husband who is in Georgia at a military school. Thank God he will be home in14 days (he's been gone for 2 months and 2 weeks. THen nap and eat and start all over the next day. My hobbies are reading and teaching my almost 2 year old how to dance and sing as loud as she wants.

Well I am back from the Dr's and on bed rest . Chest X rays showed left and right side pneumonias and bronchitis. So we added some meds, Z-pack,Tesslon capsules for the day cough and tussinex/codeine cough syrup (Yuck) for the night time. We stopped th Nadolol and started Coreg once a day small dose and Digitek to decrease the tachy and arrythmias and the fuid that I have built up in my body and around my heart and lungs. If I notice any bad changes in the way I feel its off to the hospital for a couple of days. I did find out that my sugar was high even though I have been craving food and sweets, and thirsty. THe Beta blockers are to blame for the weight gain of 8lbs in 2 weeks and for the big bruises I keep getting. Oh well! At least I am home. I just found out that one of my Aunts that I have'nt seen in years has double pneumonia and is the ICU in my home town. I don't get to see her unless she gets worse. Illness is the pits. THank you all for your help and for listening. Pam P.S. Don't laugh, but how do you put all that info at the bottom of your posts? Its your meds and conditions. I can't figure it out.

Thanks everyone for replying. My pulmonologist put me on a great medication for the mucus that is a inhaler called Spiriva. A lot of people with Emphysemia (spellling?) take it, and I have Rhinocourt and Allegra D. The Allegra D has pseudephederine in it so the hospitad swithched me to Claritan. I still have my Albeuterol and nebulizer but they make my Heartbeat skippy and tachy. So I try to stay away from anything that triggers my Asthma. However, once I get a cold it takes forever to get my lungs clear. I always end up on Zythromiacin at least twice during the cold weather months. I hope my doc has done some more research on the meds since I spoke with the nurse Monday. He seems to wait to look into treatments until I am right there with him. THat is why I gather as much info as possible before I get to the appts. THanks again!

Help Needed! I am asthmatic and have had a chest cold and sinus infection for three weeks. When I was originall prescribed my Nadolol by My Neuro Doc my Asthma was under control. Now due to recent illness and the season where my Asthma is always worse the Nsadolol is making me choke, cough, wheeze, hoarse, and have so much junk in my lungs that I can'y expel it all. I get a little relief from my rescue inhalers and Nebulizer but they make my pulse go way up. Any one out there been through this? I take the Nadolol 10 mg twice a day or 20mg daily Am I am still trying to figure out whats best since my las Holter showed me Tachy at night whhile sleeping. I have POTS, w/NCS and pass out here lately more than I have since diagnosis in MAy. Sorry so long Pamela Oh I have a doc appt tommorow to discuss this so help is needed soon

I have had a chest cold and sinus infection for about 3 weeks now curtesy of my 20 month old going to a daycare for a couple of hours. I am recovering slowly with the sinuses and I did notice a increase of heart rate aldso and vertigo like symotoms when standing . My ears are killing me when I bend over or shake my head. THe cough though has gotten worse and my asthma and chronic Bronchitis is flaring up severly. I am Nadolol which is a no- no for Asthmatics but I think the neuro doc forgot about that. I did not have any problems with my Asthma during the summer mobths but now that we are going into the fall and winter things always get worse in the asthma dept. So now I have no relief with my nadilol because my breathing is affecting my heart rate and BP and so are my nebulizer and rescue inhalers. I need advice so I can help the doc tommorow at my appt. when he is looking for an new med/treatment for my tachy and arrythmia. THanks for listening. Suggestions welcomed at this time. Hope all feel better soon. Also Flu shot did aggrevate my POTS symptoms

Just another me too! i DROPPED TO 50/30 with a increase in pulse from 78 to 140 the tachy was immediate then stayed up until I went down. Was I was layed back down my BP recovered but I stayed tachy for a couple of hours until the Docs gave me Atavan again. You are to be commended for going to such a prestigious College llike Oxford. With your conditions I know that it has to be a struggle. So hang in there ! Pam

Hi sorry to hear about your hair loss. Mine fell out in droves and handfuls last year after re starting my blood thinners. Then again just last week. It fell out alittle more than normal after my bout of POTS symptoms that landed me in the Hospital earlier this summer but it was not as bad. One Doc said everyone loses hair, the next showed a little more concern after I showed him a bag full at his office. So if they aren't takeing you seriously collect a sample after your next shower or brushing. Then the pharmacist and internal medicine docs attributed it to stress, side affects of the blood thinners, lack of circulation to scalp during episodes of low BP, and PMS. It did stop after a couple of months. I ended up cutting my hair that was mid back length to my shoulders and that helped. So stay calm and relax. I cried on my mom's shoulder this past week about it (literally) and I am 32. The loss of hair to us girls is drastic and scarey and you are alowed to be upset. Keep your chin up!

Sorry to hear about the rude incounter at Wal MArt. You did the right thing to walk away when you got sngry and your husband was very considerate to explain to the butthead that you were sick and deserving of their kindness in letting you (the money spender who is paying his check), borrow the motorized cart, so that you may shop at their store. Go to Target for better service and quality. Your lucky to have such a patient spouse. I think my husband (mom and dad too) would have told the guy off and took the cart. THen found a manager and complained. I am glad to see that I am not the only one suffering from shopping brain fog. I know why I went to the store...but don't I also need...? OoH this is a neccessity..? Shoes anyone? Right now I need flat shoes for Church, heels just make the POT's risk of a fall so much more dangerous especially whin your dizzy from trying to sing. But the new heels look so nice and the boots.... Last month I came home with 3 new Bras and blamed my POTS, I needed something to wear when I had to wear a Holter Monitor, that did not have any metal. But I also needed a new Bra because the dog ate one. Well I got to dizzy to try them all on and just grabed three that looked right and payed for them. My husband said that he has to go with me when I shop or I will but the whole store because I can't remember what I don't need, and can't make up my mind on what I do need. HA HA

I also have Asthma and chronic Bronchitis. The Pulmonary doc put me on Spiriva to try w/o my 50/500 advair. The Nodolol exhaust me by lowering my BP too. I just restarted it at 10 mg twice a day with my Lexapro in the PM. The 20 mg in the Pm knocked me on my butt. I do seem to be coughing up a lot more icky stuff now that I am on the Nadolol, but I did that before and the doc put me back on a allergy med that had pseudophedrine in it. Here Guinea pig, guinea pig... hope you get some relief soon! Pam