Hi everyone! In the last few weeks ive been experiencing pressure in my head and i can feel my heart beating in my throat. I have a headache every day and my legs are swollen, and my belly is looking very bloated. My blood pressure has been very much higher than normal ranging from 130/90 to 150/107. Has anyone else experienced this? I am still waiting to see a specialist and other docs dont know what to do with me. Does this happen with psc pr could it be unrelated? Thanks
first of all, i don't know anything more about you than what you have already posted. if you are like other psc sufferers, you are probably taking a ton of medication. one or more of those drugs may have a side effect of increased blood pressure.
what has changed in the last few weeks?
i will tell you that carbohydrates and sodium cause people to retain water sometimes increasing blood pressure. cutting back on processed food and not adding salt could help you reduce bloating and high blood pressure.
Hello Annick
Do you have Cirrhosis? Bubba is right, we don't know anymore about you. I find it hard to believe your doctor doesn't know what to do [that is basic]. Perhaps a change? Like Bubba, I would change the diet. Get off salt, sauces with salt, salty food and no alcohol...etc. Especially while you are in crisis mode. THIS TOO SHALL PASS. Hang in there!!! This is totally NORMAL for us. Have you POOPED??? If not, #1 priority is to take care of that issue.
Let us know: Mona
Hi Annick,
It is blowing my mind that I read this post today because I spent the evening in emerg. for those very symptoms. The doctor on call appeared very knowledgable about this disease and shared with me that he treats several of his own patients, along with a specialist, for PSC. He told me that my symptoms are a sign of progression of the disease as it is the first time I deal with this. My specialist is 8 hours away. I was given water pills as I am so swollen that my feet and legs are 3 times their normal size and breathing is quite difficult if I do anything. I am on 2 different blood pressure pills as it used to be quite high, however is controlled right now. I too have experienced pulsation in my head (especially when I lay down) and my vision will sometime pulsate as well. Headaches have become a regular thing in my life. I am not trying to diagnos you however I just thought I would share what I am currently going through. He also mentioned what others have told you about certain foods and medications. I hope this is somewhat helpful for you to know that you are not alone. I find this site so very helpful for that very reason. Take care
Hi everyone thanks for your replies. I have been trying to cut down on sodium recently because of the bloating. It doesnt seem to be helping all that much. I am not on any meds yet, i was just diagnosed in march and havent seen a specialist. My family doc was concerned and is trying to rush my appt with the specialist but she said she isnt sure what to do. I may just have to go to emerg. I very much appreciate all of your replies, thanks for your replies!
Ohh and i dont know if i have any cirrhosis i havent been fully explained my results other than i have psc because of multiple strictures intra and extra hepatic, and that i would have to see a specialist. And i have definately been pooping 
Hi Annick,
I notice that you live fairly close to me...are you seeing a specialist in the city? I actually go to Toronto to Toronto Western Hospital Liver Centre. I saw a doctor in both Sudbury and Sault Ste. Marie, although those places are only a 2 hour drive either way, I am finding the service that I am getting in Toronto to be excellent. I see Dr. Jenny Heathcote. She is an amazing woman, could use better bedside manners but is very knowledgable. Hope this helps. Take care
Hi Claire,
I have been waiting to see dr tilbe in sudbury but cant see him until end of september. I might be getting an earlier appointment with a dr in north bay , otherwise my family doc will be sending me to toronto as well.
Thank you for your reply, well have to keep in touch!
Annick
My son has PSC, he had the leg swelling and stomach bloating, this is directly PSC related symptoms. They put him on blood pressure medication and a low sodium diet. PSC causes changes in the way blood flows as the inner and outer hepatic vessels and ducts are damaged. Thus, causing portal hypertension resulting in the swelling, headaches, and can also cause esophogeal varices. My son has underwent banding of the esophogeal varices twice. I do hope you are able to see a dr. soon, as this symptoms needed to be treated quickly.
Thanks Barbara, i actually just got booked in for tommorrow, just got the call. Im so relieved, These symptoms are very scary for me and i need some kind of treatment or guidance.
good luck annick. i am interested in how the appointment goes.
Thank you Bubba29 for sharing this information as it is helpful to me as well. Now I dont feel so alone.
Claire
Ill let you know how it went
Good Luck Annick. I am SO GLAD you are seeing a doctor SOONER than later.
Keep us posted.
Mona
Annick,
I got portal vein hypertension from my PSC related issues (something about the scar tissue preventing blood flow to the liver) which caused a spike in my blood pressure. I take nadolol 2x daily at 20mg to counteract it and it works really well. You may also want to ask your doc about checking for varices in your throat. Lots of people with PSC develop them due to the high blood pressure, and they can create another set of risks.
Hi, Annick... I also have portal vein thrombosis, and take Propanolol 60mg once each day to aid in it's control. I have gained close to 30lbs. of fluid weight in my abdomen and legs - and am having a blood clot study done to check my clotting because if I have a tendency towards it, I will no longer be eligible for a transplant. Make sure you know if you have any clot building up via a CT scan or and MRI. Mine developed inside of 3 months time after discovery of extremely enlarged varices in my throat and esophagus. I have had no elevated numerical values in my blood pressure - in fact, it's the only "good" number that I have!!!
Barbara hit the nail on the head. My fiancé had shown signs of swelling in his legs and belly button last month, though no headaches like you described; we saw a specialist and reports showed he had venous stasis. There were no medicines prescribed , he is already on a handful. Compression stockings were ordered (he’s yet to wear them) and we’ve been salt free since. The specialist also told us of some simple home remedies. We have phone books at the foot of our bed to elevate his feet at night. While sitting at his desk he keeps his legs straight. In the evening I’ll rub his legs and feet (his favorite practice). His legs have not swollen like they did before, here and there he’ll see a little swolleness around the ankles but not like before. I believe the salt had a lot to do with it, and the phone books surely helped for him.
Checking in...
Annick, how are you? I know this is an older post, however what came of the reporting you had done?
Pandora how is the clotting and bloating? We are beginning to see quite a bit of bloating in the lower abdomen which is confusing and frustrating. All the information out there can be overwhelming.
-G