HomeRegisterLog inFollow us on facebookFollow us on twitterFollow us on youtubeFollow us on LinkedinFollow us on PintrestContact usFeedback


Share  | 
 

 Can anyone help with this ?

View previous topic View next topic Go down 
AuthorMessage
traceyb
Member
Member
avatar


PostSubject: Can anyone help with this ?   Tue Apr 27, 2010 8:32 am

Hi
Just wondering if anyone suffer's with swollen legs and ankles (also hands) this was happening before i was diagnosed with BIH doc said it was water retention and put me on Fusomide tab's. Just wondered if it was a symptoms that went along with BIH ?? even though i'm taking fusomide and have has the dosage uped my ankles and legs are still swollen :sad
Another question i wear my sunglasses on top of my head as i cant stand bright lights, sunshine and have noticed that when i take them off i have an indentation in the top of me head where they have been sitting an it lasts for quite a while before it goes ?????? could this be to do with the water retention?????
hope someone can help with this :grumpy
trace x
Back to top Go down
GranC
Member
Member
avatar


PostSubject: Re: Can anyone help with this ?   Tue Apr 27, 2010 5:48 pm

hi

yes i do, I also was suffering with it for 2 years before diagnosis and put on frusemide, at 1 point I had my frusemide increased to 80mg daily and sent for a heart scan because they thought I had gone into left heart failure, my lower legs were so swollen they were leaking fluid, my heart was fine. I have low blood presssure, always have had, perfect cholesterol,needless to say they couldn't find a cause. At the moment only my left ankle is swollen and i am taking 40mg frusemide.

It is interesting that you have this problem, I have never associated it with I,. this is the first time I have heard mention of it in a fellow IH'er so there may possibly be a connection or just purely coincidence. I have always put it down to water retention or side effect of one of the drugs I take.
Back to top Go down
traceyb
Member
Member
avatar


PostSubject: Re: Can anyone help with this ?   Tue Apr 27, 2010 5:59 pm

Hi
its my right ankle that swells the most but i do get it in my left one, i am also on 40mg of frusomide, its nice to know i'm not alone :-)
i also thought it could be due to medication i take !
trace x
Back to top Go down
Heidi
Admin1
Admin1
avatar


PostSubject: Re: Can anyone help with this ?   Tue Apr 27, 2010 6:05 pm

Yes, I have the same problem, which is why I was kept on Co-Amilofruse. I myself think that we don't get rid of the fluid as easily as other people, and I've been telling my Neuro this for years. Yesterday proved my point, and a letter is now going off to my GP.

To elaborate, yesterday I had to go for a pelvic ultrasound, and had to drink a pint of water before going, and not go to the toilet. I deliberately didn't take my Co-amilofruse, as obviously they would make me go. Anyway, when it came to the ultrasound it turned out there was hardly anything in my bladder, so I had to drink another pint of water so I could go back in, so they could try again.
When I went back in half an hour or so later, my bladder still wasn't full enough, infact there was hardly anything there, yet my fingers, wrists and ankles were swollen and I ended up with a headache. They then not only did my pelvic ultrasound, but found it necessary to include a kidney scan on what they'd seen.
So this being said, it makes you wonder where the fluid is going, and how much of your weight is actually caused by the fluids you're drinking, not going to your bladder. Of course this is only my personal experience, and I've as yet to discuss it with my new neurologist, but it if we all have a commonality of swelling like that, it makes you think doesn't it. I found this link to a helpful leaflet.


Last edited by Heidi on Tue Apr 27, 2010 11:39 pm; edited 4 times in total
Back to top Go down
http://www.ihaveiih.com
macario
VIP Member
VIP Member
avatar


PostSubject: Re: Can anyone help with this ?   Tue Apr 27, 2010 10:31 pm

Edema (formerly oedema, dropsy, hydropsy) is the right term for such a condition. Though the immediate treatment recommended is Furosemide (Lasix) one may take a look at this quick run-down of the condition and other home remedies that will speed up the decrease of the swelling.

Here's a quick read from the Mayo Clinic



Our opinion counts so opine with care. In case of uncertainty, silence will do. Earl of Marlborough
Back to top Go down
Guest
Guest
avatar


PostSubject: Re: Can anyone help with this ?   Wed Apr 28, 2010 6:12 pm

My first question is, I wonder how long you have been on Acetazolamide? I have been on it for three years now, and wonder if the edema is related to the medication. I know it makes you "pee", but I wonder if the kidneys are affected by the acetazolamide, depending on the dose. I remember hearing from an IH support group that there were members who had problems with their legs. With the recent problems with high pressure, prior to that, I had pain in my right foot, and figured it was possibly a change in sneakers or residual nerve pain, or aggravated previously injured ankle. Hard to tell.

Next, there is an excellent B6+ that I have been taking for a few years. The catch is, that it needs to be ordered by a chiropractor or possibly a doctor of some form, even alternative type such as one certified in accupuncture. And, the doctor needs to be willing to make the order for you, and possibly sell more it in the office. It cannot be ordered by a massage therapist, and that is the unfortunate thing, with my husband being a licensed and certified massage therapist. Name of B6+ that has not interferred with acetazolamide is: Anabolic Laboratories B6-Plus. One thing important is that we need to make sure we have the right balance of magnesium, and so on. Also, we lose Potassium through diuretics. Now, for example, we ran out of the B6-Plus and I got a B-Complex at a health store, and it did not do the same thing, even though it seemed to have a similar amount of MOST of the ingredients in the B-6 we have been taking for years. Also, this B6 Plus has Potassium.

Hubby says: One other suggestion is also to see a good massage therapist if you are able, and ask for Lymphatic Drainage. It also could mean that the water you drank before the test, went into your body tissue. In general, we need to make sure we drink enough water to keep our bodies hydrated, to counteract the effects of the acetazolamide. The body tissue may have absorbed the water, since it needed it, although you have edema! Sounds a bit crazy, but plenty of water is needed to remove the toxins in the body and to maintain homeostasis. Homeostasis is the body's way of balancing everything - fluid and removal of toxins, lactic acid, minerals, oxygen, uric acid, etc. Also, be sure to work with your doctor, and there may be blood work that could identify why this occurred - that the water did not reach the bladder as it should have. The doctor could order kidney blood tests to see how well your kidney is functioning. It is possible the water you drank, literally hit the kidneys, and was re-absorbed into the body tissues. The body has diffiiculty filtering the wrong kind of fluid IF we do not drink enough water. Again, it is good to have a blood test to check magnesium and potassium levels to make sure those are at the right levels. Too much potassium can cause problems, as too little of it can cause problems, including pain in the legs especially when trying to walk up steps or up hill and so on.

I may need an ultrasound too, as I had surgery a few years ago for Endometriosis. At times, I wonder if it has come back. Thank you for the warning about the water not reaching your bladder! If I do need the test, I will have to see "how well my bladder is working" if I have to drink all the water! I understand how annoying this test is. When I first had it done, I drank all the water, only to find out I was waiting over 45 minutes to have the test done! I kept checking in, and told them I pretty soon would not be able to hold it much longer. Then, after the test, I had to wait for someone to get out of the bathroom! The facility has since been re-modeled so that there is a bathroom in each of the ultrasound areas. In my case, it seems that water hits my bladder fast!

Wishing you the best!
Back to top Go down
Guest
Guest
avatar


PostSubject: Re: Can anyone help with this ?   Wed Apr 28, 2010 6:15 pm

http://www.merck.com/mmpe/lexicomp/acetazolamide.html

This is a link that may give some info on the effects of Acetazolamide. I just saw in there, the cost of the prescription, too! I know the time release is so expensive, and adds to the "donut hole" fast with medicare. As we all may know, there tons of side effects of acetazolamide, including those to the kidneys.
Back to top Go down
Heidi
Admin1
Admin1
avatar


PostSubject: Re: Can anyone help with this ?   Wed Apr 28, 2010 6:48 pm

I haven't been on Acetazolamide for ten years or so now, I couldn't tolerate the side effects, and it was badly affecting my stomach, so instead I was put on Co-Amilofruse which is a loop diuretic. Although when I was on Acetazolamide they had me fluid restricted to 3 litres of fluid a day.

Any diuretic can affect your kidneys which is why bloodtests are supposed to be done on a regular basis to check them, but if your doctor is anything like mine, I only seem to get this done once in a blue moon.

I think we women are more prone to extra fluid retention because of our hormones, we gain at least 3lbs on our monthly cycles, and if you are one of the unfortunate like me, to suffer them more than once a month and they are heavy, then it accumulates.

The Acai berries that I'm taking at present have a lot of benefits for people like us with IIH. As you quite rightly state we lose out on a lot of essential minerals and vitamins. We can't process vitamin D and seem to have problems with B6 and B12. On top of this there is loss of potassium. All the things that are necessary we seem unable to retain.

The downside of diuretics is dehydration, but then you are caught between a rock and hard place when you are constantly rehydrating, because then we end up with swollen ankles and so on.

I have often wondered why they have never really looked into the way our bodies are absorbing the fluid. After going for my scan, it has left me wondering if my increased weight is down to not being able to fully get rid of fluids. It's almost like catch 22. I've been mentioning for years to my Neuro, and he just sends me for periodic thyroid and cortisol tests.

Great advice from your husband and it's something I'd certainly not thought of. I think I'd like to know more about what lymphatic drainage is. Thank you posting this it's been very helpful and given me something to think about.
Back to top Go down
http://www.ihaveiih.com
Sponsored content




PostSubject: Re: Can anyone help with this ?   

Back to top Go down
 

Can anyone help with this ?

View previous topic View next topic Back to top 
Page 1 of 1

Permissions in this forum:You cannot reply to topics in this forum
www.ihaveiih.com :: Living with IIH ::  -
Jump to:  
DISCLAIMER This group is not managed by anyone in the medical profession, but by people who are either affected by, or are closely connected to IIH. Information provided on this site is meant to complement & not replace any advice or information from a health professional, users and members are reminded that medical professionals should always be consulted in all aspects of health needs.
Protected by Copyscape Web Copyright Protection Software
Top Disability Websites
Free forum | © phpBB | Free forum support | Contact | Report an abuse | Free forum