Is this my new normal?

[PainInTheNeck]

Do you ever get rid of all symptoms?

Hi to everyone....it has been awhile since I have written. I am sorry to hear that so many people are suffering with this.

I have a couple questions ..... do all the symptoms ever go away??? I seem to have a low grade headache every single afternoon and it is markedly worse with the more active I have been.

I have this intracranial pressure every day also. I would like to know if others experience the same symptoms or if I should be looking at other causes..?
The pressure I feel also seems to be directly related to how active I have been. I do NOT feel this pressure during the activity but once I have sat down after being active...then when I stand up and then it is not immediate...it takes about 30 seconds to happen and it feels like something is gripping my insides. I have described it to nonleakers as feeling like a blood pressure cuff is around the inside of me....not painful but very uncomfortable.

I also have arm and knee problems. I have pain that seems to be mostly in the joints. For a few months post patch I had very painful arm symptoms that have mostly subsided but now my knees seem to hurt most of the time.

Does this seem like the sypmtoms that follow leaks? I feel very fortunate that I am mostly functional but still I am not normal and I want to know- is this my new normal?

[GingerLox]

Dear Pain-In-the-Neck..........Have you gotten any more information on your raynaud's type syndrome? It sounds like the joint problems that you might be having could be related to that type of activity. I can't remember, did they ever check you for a connective tissue disease, i.e. Lupus? Remember, I am the one that believes that my Lupus is aggravated by my leak. I think that the protein in the fluid causes my antibodies to react, causing an immune reaction. Maybe there is something to that for you as well since Raynaud's can be related to an autoimmune process?

As for the headaches, I don't know what to tell you there. I don't have the headaches..........I believe it is because I think my leak pathway is the only way out for my fluid and that the normal way out might be blocked or damaged. So I may not be depleting my fluid supply but actually allowing a place for the fluid to escape. When my fluid doesn't drain well on a given day is when I get headaches. It is the opposite problem for me.

I do have what is known as Dysautonomia caused by damage to the brainstem, and I suffer from orthostatic intolerance related to that. When I stand up I get a significant drop in blood pressure that will give me a pressure sensation because all of my blood is pooling to my extremities. Have you ever taken your blood pressure when you get that sensation? Just a thought?

Hope you improve! Fondly........
GingerLox

[PainInTheNeck]

Hi there again Ginger!

Thanks for replying! I am not a very good patient, actually as I tend to try and not suggest that I be checked for things....I guess I just don't want to go through tests until and/or if I have to. I think I also don't want to be treated like a hypochondriac so I mention these symptoms in the hopes that the Doc will draw some conclusions on his own.

I am probably a classic case of just wanting to take care of others and feeling like it is just a hassle to take care of me unless it is just totally necessary. Sorry if I seem to ask for your input and then don't follow up. I do value your experiences and advice. I guess I am just too overwhelmed at that thought of having to face some other major illness so I am avoiding.

Yikes- i just reread that and I sound really whiney.....SORRY!!!! I think I will post anyway in case it helps anyone else when they are in this kind of mood.

Best of wishes to you all!

[Concerned Gal]

Hey there Pain in the Neck!

Well, i'm afraid that i've also come to the conclusion that we now have a different kind of normal. Reading your post, I'm very much in a similar situation with pretty much similar symptoms. But, i'm thankful to be a functioning leaker at present.

My symptoms currently include, head pressure issues (I can feel it when I lean forward, lie down, stand up - change in pressure similar to your blood pressure cuff example), my ears go on me (listendng through a fan example) every few days (always at the same time - 5pm and always when I'm walking after coming out of the elevator and walking into fresh air), and my latest development and the one I'm most concerned about is throat issues. You may remember i posted a while back saying it felt like someone was grabbing about the outside of my neck. Well, this has eased off a bit and now it feels like the pressure is inside my throat (pushing from back of neck to the front). Now, not sure whether this is the chiari coming into play or whether I've got a bit of a throat infection and i'm over sensitive to the sensation. It's been about 3 weeks now. It hasn't affected my swallowing food etc, but it feels like it could go that way. But again, I think i'm a bit overanalysing it at the moment. Going to see a doctor next week to see whether my throat looks weird and will go from there about how I want to proceed. And i'm totally with you Pain in the Neck, i'm putting off going to the Drs because i know they won't do anything for me. I don't want to be the one with all the problems, I only like to report the little things so they can add it to the bigger picture (generally they don't bother though). But having said that, i'm here to say, take care of you!!! You are your number #1 priority. If you aren't as well as you can be, then how can you be there for your family like I know you enjoy being! (sorry bossy rant, but I'm telling you as a friend). And I know how you feel about avoiding major illnesses. But I've always felt, if you know what's wrong then you have a fighting chance of moving forward. I personally would struggle with the feeling "why didn't i see to it earlier".

Anyway, best be off. Take care all!

[waterlover]

Hello there Pain-in-the-neck,

This new normal state is something I can certainly identify with and I hope your symptoms continue to improve. It's difficult because you don't want to appear ungrateful for being able to function again but on the other had, if you still have restrictions and still don't feel right most of the day, then it is hard to balance those feelings out especially when doctors sometimes don't fully acknowledge your condition. And most non-leakers really don't get it either (except for those living with us). It is misunderstood how low spinal fluid really takes a toll on your whole being. Obviously, you will take the improvement but this condition can wear on you over time. I do believe, however, it is important to be persistent with your physicians and let them know regularly if you still have symptoms even if they do nothing. Despite the hypochondriac perception of some docs, they need to know if your symptoms persist, and almost especially if they can't find the leak. Few doctors are knowledgable about leaks and even fewer know what to do with people like us who are functioning and are still symptomatic. Most of them have almost zero experience treating spinal leaks that become a chronic condition. They need to learn from us!! The more people they see like us overtime hopefully the better they will understand it. Whether it is because some of us are not leaking anymore but the pressure sensation continues because of a desensitization of the meningeal membranes or for some other reason, the docs need to acknowledge it. So, not to worry if you sound like a broken record every time you see them. I might even approach it as a check in with them, knowing they may do nothing but you are there to inform them. Hopefully, one day you will be symptom free or maybe the symptoms will be so subtle so as not to bother you and then tell them you will let them know of that as well. Though this is not a common condition there are enough of us out there where these docs one day will benefit other patients from our input. Much luck for continued improvement.--Waterlover

[dagaz]

I don't know if that is your NEW normal... My normal is 24 hours of severe low pressure headaches where I have to stay flat on my stomach with head to one side or the other I think My head is going to get flat...lol that is my normal... I would certainly get the joint pain thing checked out.