Siskin: support for my son

[AliG]

Hi Siskin. I'm so pleased to hear how well Raven is doing. It's progress and healing. I know he still has a way to go and is still experiencing many symptoms but as you probably know already this can sometimes be a slow process. However, healing is obviously happening.

 

When you look at the symptoms that have gone , it must give you a lot of hope for the future.  I have found the rate of recovery varies at certain times. It can speed up or slow down and it seems to do both.

 

Teasing out the symptoms of withdrawal versus his natural state is a great thing, as it gives you a base to work from.

 

He might always have hypersensitivity , anxiety etc but that's the way some people are made. You say he's brilliant and I'm sure he is. He can possibly use this experience to do some good in the world. God knows, we need it. I think this experience helps to make us all more compassionate and understanding people.

 

He sounds bright and will get through this. 

[Siskin]

Thank you, Herewego and AliG. I know you both have children and understand how difficult it has been to watch our son lose 4 years of his life, and I just really appreciate that someone out there gets it.

[NaturalBorn]

good to know that he is recovering, the cognitive problems seems to be the last to heal for myself to. a lot of the other symtoms are a little better sometimes, except for the cognition and paresthesia

just a question, after drugs did he expirienced severe insomnia?

it could be a lot worst if he wasn't sleeping, severe insomnia is what caused me to go back on meds and it's what makes my withdrawal just impossible to handle, even if i don't want to i always end up taking something for sleep, and this is what keeps me being hold on meds, i take seroquel and trazaodne, and if i could at least sleep i would have been off meds now.

i think he is really lucky to have you giving him support, and you actually did your own research and founf out about withdrawal, lots of people can't see it even when it's under their noses. i'm sure that if you were just listening to the doctors, by this time your son would be on many more meds, but you actually found out what was causing the problem, so that's an achievement

wish theh best for you on this journey

[Siskin]

Hello NaturalBorn,

 

Thank you for your encouragement. He still suffers so much that it feels as if he hasn't made much progress, but when I look at it objectively I know he has. And I know you'll make progress, too. He was on meds a lot longer than you (12 years ), and I can see improvements all the time. I think it's harder for him to see the changes than it is for me...do you have someone close to you who can help you monitor your recovery?

 

He never experienced the severe insomnia that you and so many others here talk about. During w/d from the antipsychotics, somnolence (sleeping too much) was the primary complaint. Before we realized it was withdrawal, we began to believe he had narcolepsy, even had a sleep study done, to find out why he couldn't stay awake.

 

I'm so sorry you're unable to sleep; what a cruelty to have that added to all the other symptoms you're dealing with in withdrawal. But stay the course...the moderators here are super-smart and experienced, and they can help you manage your tapering.

 

You mentioned paresthesia...Raven has dealt with that a lot, too. He's working with a physical therapist who really seems to be helping him with this. He has it mostly in his hands, feet, and face, but sometimes will get it all over his body. Is yours similar? He wasn't able to play his cello for a long time; sometimes couldn't even use the keyboard on his computer. But that is all so much better now...he's playing piano and cello, and using his keyboard to compose. I'm sure it will improve for you, too. Until it does, keep playing guitar in your head. I've heard stories about people who had hand injuries and couldn't play their instrument for lengths of time, but kept listening to music and doing mental rehearsal, and when they were able to play again had lost no skills. It might also be a plus for your cognition.

 

Someday there oughta be a band for musicians who have survived this ordeal!

 

Be kind to yourself and stay the course, NaturalBorn. I believe in you and know you can make it through this and be well.

[NaturalBorn]

Hello NaturalBorn,

 

Thank you for your encouragement. He still suffers so much that it feels as if he hasn't made much progress, but when I look at it objectively I know he has. And I know you'll make progress, too. He was on meds a lot longer than you (12 years ), and I can see improvements all the time. I think it's harder for him to see the changes than it is for me...do you have someone close to you who can help you monitor your recovery?

 

He never experienced the severe insomnia that you and so many others here talk about. During w/d from the antipsychotics, somnolence (sleeping too much) was the primary complaint. Before we realized it was withdrawal, we began to believe he had narcolepsy, even had a sleep study done, to find out why he couldn't stay awake.

 

I'm so sorry you're unable to sleep; what a cruelty to have that added to all the other symptoms you're dealing with in withdrawal. But stay the course...the moderators here are super-smart and experienced, and they can help you manage your tapering.

 

You mentioned paresthesia...Raven has dealt with that a lot, too. He's working with a physical therapist who really seems to be helping him with this. He has it mostly in his hands, feet, and face, but sometimes will get it all over his body. Is yours similar? He wasn't able to play his cello for a long time; sometimes couldn't even use the keyboard on his computer. But that is all so much better now...he's playing piano and cello, and using his keyboard to compose. I'm sure it will improve for you, too. Until it does, keep playing guitar in your head. I've heard stories about people who had hand injuries and couldn't play their instrument for lengths of time, but kept listening to music and doing mental rehearsal, and when they were able to play again had lost no skills. It might also be a plus for your cognition.

 

Someday there oughta be a band for musicians who have survived this ordeal!

 

Be kind to yourself and stay the course, NaturalBorn. I believe in you and know you can make it through this and be well.

thanks for the kind words, you are so sweet. i'm considering doind physical therapy as well, but most of the time i'm to sick to go for one, i did it for a while and it helped but as soon as i stoped it all came back, so that's why i'm not feeling like doing it right now.... my mom kind of helps me but she thinks i'm just depressed (i wish!), that's all, i even tried to show her things on the internet but she just doesn't mind, she is on prozac herself so i think she cannot imagine how this drugs made me so ill. while she is fine on them you know? it's just great to see that he had some improvement, even that it might take some time to get to 100%, he is getting there, i would love to someday see you post a sucess story on this forum.

i can say that as soon as i feel recovered i will spread the word about this as much as i can!

i'm going to start my seroquel taper as soon as possible, i hope i don't get the awful insomnia this time...  i don't care what it takes, this time i'm getting off this poison!

anyway, wish you both the best of luck on this journey, keep us updated!

[Siskin]

Hello, I've gone dark for over 2 years, and thought it might do me some good to post an update on my son. I've been very reluctant to post because I feel like I don't have much good news to report, and I don't want to be discouraging to others on the board. But I also feel very very alone in this journey and don't know where else to turn for true understanding, and I hope there might be some intrepid soul who might offer me some hope.

 

Raven has been completely drug-free for over 5 years now, and as much as I've tried to be optimistic that he would eventually recover, I have to admit that it's become harder and harder to believe that it will ever happen for him. He's 24 now, still living in his little sanctuary above our garage, and still very disabled.

 

There are a few symptoms that I don't hear him complain about so much any more; top among these is PGAD. If I had to rank the horrible-ness of all his w/d symptoms, this would definitely have to be in the top 3. He's been working with some wonderful and extremely gentle PTs and and OT for almost 4 years now (biosynchronistics, cranio-sacral therapy, lymphatic drainage) and I can honestly say that I haven't heard him complain about this symptom in over a year. He still wears a pelvic belt all his waking hours, and still gets treatment every other week, but he says that as long as he keeps this up, the PGAD is under control. For anyone out there dealing with this symptom, my heart goes out to you and please keep the faith that you will get past it.

 

Other symptoms we don't notice so much any more:

 

*feelings of being exposed. He used to have to sit so he was facing the door and windows so he wouldn't feel so exposed; now he can actually have his back to the door and sit in different seats comfortably

 

*parasthesias in his face/hands/feet. Again, many many hours with super gentle OT/PT. He has a visible droop on one side of his face that bothers him some (he will sometimes pull on that part of his face to try to wake it up), but I think it's continuing to improve. (He had to have novocaine for some dental work a couple of weeks ago, and while he was numb, his facial dysmorphism vanished - weird)

 

*while he's still sensitive to light, it isn't as punishing as it was 2 years ago. He still wears his custom sunglasses - they're about the same darkness as welding goggles - but he doesn't have them on inside the house anymore, and sometimes I've even seen him outdoors without them.

 

*craffing - up until about a year ago, almost any time he laughed, it would turn into crying. It was as if his brain had only one default emotional setting - depression. We had to be very careful to keep the emotional content of all our conversations flat so he wouldn't have to go through this. Now, he's able to have a good laugh and we don't worry so much about it turning into crying.

 

*He cries less; sometimes there are even a few days (occasionally weeks) when I don't notice any crying at all. But eventually the crying comes back, and he still needs lots of hugs and open opportunities to "let it out".

 

Symptoms he still deals with:

 

*His emotional state is still very fragile - he can be doing just fine, calmly engaging in conversation with us, and then WHACK - he crashes into depression, DP/DR, and anhedonia. He says that if there were a sound associated with the crashes, it would be a stapler. This is no gentle slide into the blues. Having said that, I would not describe him as a depressed person. When he's not crashy, he's somehow able to find a way to actually be pretty upbeat, funny and smart. He studies Taoism and I think that helps a lot.

 

*Inability to think. He would still love to learn about computer science, but there is no way he can attend a live class or even take a conventional online course that works on a timeline. We've found some programming courses that are completely self-paced, and he chips away at these during brief windows when he has a brain.

 

*FATIGUE. Chronic, draining, bone-crushing fatigue. He can really only leave the house to go for a walk once a day, for appointments and for his weekly game.

 

What's going well for him:

 

*He continues to write music that has become increasingly beautiful, complex and moving. His music continues to be a source of escape and solace for him

 

*He has a small group of friends that he gets together with once a week to play Tabletop Role Playing Games. Occasionally he doesn't feel well enough to go, but usually he's able to call upon whatever cortisol and adrenaline he has remaining to go the the game and have a good time. It takes him about 3 or 4 days to recover.

 

We learned something that has been both good and bad. He has been diagnosed with Hypermobility Spectrum Disorder/Hypermobile Ehlers-Danlos Syndrome. It's a genetic difference in how collagen cells are structured; the primary symptoms in his case are extremely lax joints that dislocate/sublux easily, pain, fatigue, digestive problems and POTS. He is 1 mm shy of Chiari Malformation, and almost certainly has craniocervical instability.  And then it turns out there is overwhelming overlap among the HSD/HEDS population with anxiety and mood problems, increased perception of internal and external stimuli, headaches, neurodevelopmental problems, extreme fight/flight/freeze responses. Everything I read about it feels like they used Raven as their prototype.

 

It's really good for us to learn of this genetic disorder because it helps us to understand how he's put together. He almost certainly would have had significant problems and required support as an adult regardless of whether he'd ever been on p-meds or not. Also, now that he's been diagnosed with POTS, the strategies for managing his circulation are very helpful for his sensory hypersensitivity and overall well-being. He wears full top and bottom compression garments during his waking hours, sleeps with the head of his bed raised, eats a high salt diet, drinks copious amounts of water, and does PT exercises to strengthen his core, and all of this helps him to deal with his w/d symptoms.

 

The bad part is that our son was born with all these vulnerabilities, and then fuel was added to the fire with years of medications, and a withdrawal process that causes so many of the same debilitating symptoms as the condition he was born with. I truly believe that even though he would have needed support all his life, he would have been at least partly functional if it weren't for the damage caused to his fragile self. Other people I read about with HSD/HEDS are not as disabled as Raven is; my every intuition tells me that he has not recovered from his medication experience and that the tender age at which he was medicated has caused permanent damage.

 

My apologies for the length of this post - too much bottled up inside of me. My deepest gratitude for SA being here always.

 

 

 

 

 

[ChessieCat]

Thank you for coming back to update us.  We really do appreciate it.  From reading through your post it seems that there has been a lot of improvement with regards to recovering from the drugs.  Unfortunately EDS adds a whole other dimension to the issues but on a positive note, at least you know about it.

[Lexy]

Hello

Please know you are not alone.  I can 

empathize with you as another mother.

my daughter has shown me your post to let you know that in fact YOU are NOT alone.  

Very briefly....

my daughter was placed on antidepressants and reacted very badly she has been far worse than the original depression anxiety and ptsd.  

Thanjs to this site we became aware of withdrawals. After 6 years she is better however still suffering.  These withdrawals are not as intense and not as frequent but still there.  She was only on p-meds for 6 weeks.  She is still tapering after 6 years!

i truly believe your son will in fact be better it might take a very long time but I see every progress as a good sign that eventually they will come out of it. 

I know I felt so much despair I had to understand that recovery was not weeks or months but in fact years..

plese never lose faith your son needs to feel all your hope and faith for him.

Be well. 

 

[Altostrata]

Siskin, thank you for returning to let us know about Raven. He is so fortunate to have such a loving mother.

 

It does seem that his medical condition may be contributing a great deal to the persistence of the post-drug symptoms. Still, it's heartening to hear of his progress with some of his symptoms and his pleasure in his music compositions.

 

I don't know if these will help Raven or how it might react with his medical condition -- a lot of people find fish oil and magnesium supplements helpful, see
http://survivingantidepressants.org/index.php?/topic/36-king-of-supplements-omega-3-fatty-acids-fish-oil/
http://survivingantidepressants.org/topic/15483-magnesium-natures-calcium-channel-blocker/

 

They tend to be calming. Magnesium relaxes muscles. Try a little bit of one at a time to see what the effect might be.

 

How about a weighted blanket? Raven might find this comforting as well

 

PS I found this paper, it's only a single case report that may or may not apply to your son, but attributes PGAD to unusual muscle tension.

 

 

[Siskin]

Hello ChessieCat and Lexi and Altostrata,

 

Thanks so much for reading my long post and reaching out ... it really helps so much to know that someone out there understands. I try so hard to be encouraging and optimistic for my son - I don't ever want him to feel like he's being 'pushed off the island' - but after so many years, I'm starting to find it difficult to remain upbeat about recovery and have actually been focusing my energy on remaining upbeat about permanent disability. I need to remember that reaching out to folks on this board is a part of my toolbox, just as meditation and music are part of my son's toolbox.

 

At the present time, the only supplement he's taking is Vitamin D. After taking him off of the dozens of supplements recommended by the practitioner who tapered him off Prozac, we kept him on Magnesium and Fish Oil for quite a long time (mostly b/c of what I'd read here on SA). But when we decided to take a break from those, we didn't notice any worsening of symptoms, so on his request, he remains off. He eats a LOT of nuts and seeds, leafy greens, and red salmon, so I'm fairly confident he's getting adequate supplies of both of these through his diet.

 

We had weighted blankets for Raven and his brother (also autistic); his brother LOVED his and slept with it every night until he went to college. Raven never really liked it, so I eventually sent his off to a great-niece (she loves it as much as our other son did). He does, however, wear full top and bottom compression garments, which have a similar effect. He finds them extremely comforting, to the extent that he'll wear them even if it's 90 degrees out.

 

The PGAD doesn't really bother him any more. Physical therapy was key for him, and I agree that muscle tension might have been a contributing factor. His PT's theory (which I will explain very poorly!) was that in his case, b/c of his collagen disorder, his blood vessels are too lax to create adequate pressure to return blood to the heart (this is why people with HEDS often have POTS). Then with the laxity in his pelvic joints, his fascia knitted up as tight as an armored suit to hold his body together (I believe this was also at least partially the source of his parasthesias). This external tension made it even harder for blood to flow correctly, and probably placed undue stress on the nerves in the area. After a couple of years of extremely gently fascia release, paired with the pelvic belt helping his body do the work of staying together, things seem to be working appropriately. Withdrawal was definitely part of the formula, however, as he developed horrific cases of PGAD both times he came off SSRIs (when he was 12, and again later when he was 17).

 

Anyway, thank you all for your kind words and loving support, it means so much to me.

 

 

 

 

 

 

[Altostrata]

Siskin, can you find a support group, maybe online, for EDS and parents of EDS folks? That might be of some help to you.

 

I feel for your son, so much trouble all his young life. He must feel very self-conscious about being different as well. 

 

Osteopathic manual therapy might help him feel better. It's hard to find D.O.s who practice this treatment, it's very time-consuming and not compensated by insurance, but it can be astonishingly effective for bone, muscle, and alignment issues.

[Siskin]

Thank you, Altostrata - I can't begin to tell you how much it means to feel that someone else cares about our son. We live in a small, remote town and don't have access to any DOs here, but the OT and PT he works with are tremendously gifted at manual therapy. So much so that he let me know yesterday that he feels like his body is relatively stable, and he would like to reduce the frequency of his visits from every other week to every 3 weeks. This is a huge improvement for him - when he started with PT, he couldn't even tolerate for her to touch him anywhere on his body for the first 6 weeks! He worked with a chiropractor to address his scoliosis during his teen years (while still on meds and could tolerate that type of work), but looking back on that, the treatment was too intense and not very holistic. So I think we have a fairly good team assembled. Also, I've had the distinct pleasure of having his OT do body work on me; she uses a mix of cranio-sacral, lymphatic drainage and biosynchronistics that is phenomenally calming - she put me in absolute LaLaLand - and Raven always comes out of his appts with her feeling serene.

 

You're right that I need to connect more with the EDS community. I visit themighty.com and also the EDS group on inspire.com sometimes, but I never post (as evidenced by my absence on this forum, I'm not much of a social media person!). I should probably throw myself out there more to see if anyone else is dealing with complex issues like ours - I might be pleasantly surprised.

 

Thanks again for all you do.

[Altostrata]

Thank you, Siskin. You are a lovely person and mother.